Up and Moving

Micah is on the mend and consuming food again. We have kept him on simple starchy things as to not aggravate his belly too much, but I feel like we should be close to resuming his normal diet. His legs got very weak during the stomach sickness, but he is mostly willing to do his exercises to get better. I have had to readjust my parenting style a bit as we move from room to room (we mostly hang out on the floor or couch.) It is much different than it was with my usual rambunctious boys. I now have to come up with fun ways to get them moving instead of coming up with ways to get them to settle down! (The upside is we are playing many educational games and learning some new things-these are great for Micah's fine motor skills). Owen has rarely wanted to leave Micah's side, so we have to implement some fun running around with him too. I will make up obstacle courses for us to run, and then we will get Micah and walk them. Hopefully, the weather will turn nice again soon, and we can do some of this outside. I think a little sunshine on our faces will do us all some good! Micah will finish up his steroid very soon and hopefully, his immune system will get back up and running. This last bug caused a major setback. I don't want to be a crazy "germaphobe", but at the same time I have to try to protect my little boy right now. We went ahead and kept Owen out of school this week since we had so much family helping us, and we have all been hanging out at home. Hopefully, next week we can all stay healthy as we resume normal life, and Micah begins his therapies.

Numb

So... we have suffered a major setback. This "stomach bug" has really kept Micah off his feet. Combine that with some severe muscle wasting from the steroids, and we are back where we were two weeks ago-taking a few steps and climbing a few stairs with help. It is discouraging to see and hard to stay hopeful. Micah says his tummy hurts so bad. His prayer request every night is that God will heal his tummy. It is possible that the steroids are causing an ulcer, or it could just be hurting from whatever is causing all the vomiting and diarrhea. Please pray that we could get over this hump and that his stomach would settle down. I cringe every time he has to take that steroid. I know it is what is keeping us from having rebound inflammation, but it is also what is causing all these horrible side effects.

I called in many reinforcements last week as Matt went back to work. Taking care of Micah with all the tummy issues has proven to be quite a job. Matt's family helped throughout the week, and I called my mom on Thursday to come help. We are so thankful that everyone has been so willing to sacrifice and help us. The hardest part for me is watching everything and being here by myself-my mind starts racing and I am faced with making decisions that I don't know how to make: Is it time to go to the doctor, does he need to be back in the hospital, am I feeding him the right things etc. etc. Having someone here is calming for me and frankly, just necessary.

People say "I don't know how you are doing it." It is by God's grace alone I tell you. I don't know how I am doing it either. I tend to numb myself up before I go care for Micah. If I don't, then I will breakdown and that is not helpful for anyone. I wake up in the morning, ask the Lord for help, and I care for my children-just like I did before all this. It is different in so many ways, but in so many ways it is the same. We get dressed, eat, and play-it just takes a little longer and looks a little different. We are trying to take things one day at a time. Right now, thinking about the future is painful. Scripture tells us "Therefore, do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble."-Matthew 6:34.

Even though our souls are troubled, we will praise the Lord and wait on him.

Wait for the Lord;

Be strong, and let your heart take courage;

Yes, wait for the Lord.

Psalm 27: 14

A Spoonful Of Syrup...

...helps the medicine go down. Poor Micah seems to have been battling a stomach bug the past few days. The main concern has been getting his steroids down. Steroids are funny drugs, and you can't just stop taking them without some serious things happening. We were contemplating injections but didn't want to have to give Micah painful shots on top of everything else he is going through. Thankfully, with the help of prayer and Hershey's syrup, we have kept his doses down (a very helpful pharmacist at Harris Teeter made the suggestion of masking the bitter, gagging flavor of orapred with chocolate!) To say this bug has thrown us for a loop is an understatement. We feel like we keep getting hit on all sides these days. As if adjusting to life wasn't already challenging enough, we have spent most of our time in either in the bathroom or laundry room and scrubbing carpets and sheets. I want to say a special thanks to those bringing us meals, my neighbor for saving the day yesterday with packs of pull-ups, Stanley Steamer for making me feel clean again, Aunt Maggie for helping with the other kiddos while I was helping Micah, Owen for deciding to be a sweet helper again, and Margot for taking a four hour nap this morning. The Lord has been faithful to us. Just when I really start having a pity party, He shows His face in such a tangible way and reminds me of His goodness. The amazing thing is that Micah is staying so positive through yet another trial. He amazes me with how he is handling this. I can't imagine what he must be thinking after being so sick for so long. I, on the other hand, am having a hard time staying positive for him as I watch his body become weaker again with dehydration and malnutrition. It is hard to not see improvements. We postponed our therapies until next week as we feel Micah needs to rest and build back his energy stores before we start pushing him physically. We also found out today that our insurance doesn't cover occupational therapy. It will, thankfully, cover the physical and speech therapies, but we now have to decide what to do about the other. I think I will be doing some research tonight and adding another job description under the title Mom! I really want to be able to do as much as possible for Micah at home anyway. I know it will be easier in some ways to work with Micah myself: I won't be having to drive to and fro, I already know and love him, I know what makes him tick, and I just enjoy playing with him. Time will tell if this will work or if we will explore other options. In the meantime, we will keep loving each other, working hard, and relying on the Lord's grace and strength.

What About Me?

Since I practically lived in a hospital this past month and didn't even get my 5 month post, I told Mama that it was my turn!

I got a new swing, and I love it-especially when my big brother gives me pushes.
Here I am on day two of my rice cereal. I decided not to take any bites at all even though I loved it the day before. See the pretty tulips in the back? They aren't for me, but I love them and talk to them every day.
Here I am practically sitting all by myself. Mama says it should be very soon if I am anything like my brothers. I also like toys now.


This was the first day of my rice cereal. I really liked it and ate a healthy portion. I made Mama a stinky present at 2 am that night. My big brother, Owen, took this picture. He is an aspiring photographer these days.

I was a sweet girl in Atlanta and liked being pushed around in the stroller that Dylan let me borrow.

And this is the famous trick that my Dada does with all the babies. It really freaks people out, but I love showing off!

Free At Last!

These photos were taken last Thursday in Atlanta after we were released from the hospital and before we headed back to Nashville.

We Are Home

We made it home Friday afternoon. Our neighbors made a sign for Micah (and were all playing outside to welcome him home!) and my in-laws had their housekeeper clean our house. We walked in to a wonderful smelling home complete with balloons and tulips from Micah's great grandma! It was a wonderful homecoming. However, we weren't here long before the tears began. Micah has had a hard time being home. I think the realization that he really can't do the things he used to is hitting home, and it is hard for him. He gets frustrated that he has to rest all the time, he is getting discouraged and thinking that he will never be able to do the things he once could do physically. We are trying to encourage him and keep his spirits up, and we are praying for God's peace for him. Also, we were awakened last night to cries coming from him. He began throwing up after midnight and was still unable to keep anything down this morning. He is resting well now, and we are hoping that this is just a product of all the medicine and not another virus for him to fight. I am unsure what we are going to do about getting his medicine down, and at this point are waiting for a call from the doctor. I will continue to update as I am able. You have all been so wonderful and faithful in praying for our family. It is a challenge to raise three small children under normal circumstances, but I am sure you can imagine, this takes it to a whole new level. Computer time is scarce. I also have lots of pictures (some of a little girl who had a big day yesterday-first solids!, and many of our sweet Micah) that I am hoping to get uploaded today.

This is the day the Lord has made; let us rejoice and be glad in it! -Psalm 118:24

So Sweet

He loves you too! Hopefully, we can take a trip to visit soon.

(This is Micah's preschool class)

Again!

We have all our children under one roof again! It feels amazing. We are staying the night here in Atlanta and will head home in the morning. Micah is so happy to be back with us, and Owen has the biggest smile on his face. Praying for a safe drive home and a restful weekend with all our babies.

Going Home!

Micah is doing so well that they are ready to release him from the hospital here! There are some final evaluations etc. to do, but we are hoping to go home Friday. You can only imagine how excited we are to take our sweet Micah home. I am very curious how he will respond to being home in a comfortable, familiar environment with his siblings and Mama full time.

My mom has been here for the past few days (so helpful!), which has given Matt a chance to come be with Owen for a little while. Owen has been having a little bit of a hard time. We aren't really sure if it is nerves, but he hasn't been eating much and his tummy is upset. I'm sure he has so many emotions that are hard to process. He has lost his best friend and is generally apathetic about playing much of anything. I'm so excited for him that he will have his brother back soon!

I was able to spend a good deal of time with Micah this morning. I know everyone wants to know how he is. It is hard to explain, and I have so many mixed emotions when I am with him. He is definitely different than he was prior to the ADEM. There is no way to know if it is permanent, a product of his environment, side effects to the steroids etc. Honestly, we haven't seen any negative personality changes-just different. Sometimes I catch myself feeling sad that I may never see the old Micah again, but I also realize that circumstances shape who we are. We believe the Lord uses things in our lives to mold us into the people he wants us to be. We trust that God has a plan for Micah- one to prosper him and not to harm him and that He will work this situation for Micah's good. He looks tons different because of all the swelling. This is temporary and should go down when he stops the medicine, but it is hard to see him looking so puffy. He also is still very limited physically. While he has come leaps and bounds from where he was two weeks ago, he is far from running down the hall and jumping off the ottomans. I asked the therapist today if she thought he would do those things again, and her response was "yes, definitely." She explained that there was still so much healing that needs to happen in all the nerves and that just takes time. Although there are no guarantees, it was good to hear such a positive opinion. No one thought he would be doing this well this quickly and that is also an encouragement. We are really just so thankful and proud of our little boy, so humbled by the prayers, gifts, and help from our friends and family, so grateful for the Lord's mercy.

Look At Me Now!

(On the putting green at the hospital)

Oh great merciful Lord, thank you for your faithfulness in healing our sweet Micah. We continue to pray that he may be restored fully. What a blessing to see our Micah walk, play golf, talk, and joke with us.

I will exalt you, my God the King; I will praise your name for ever and ever. Every day I will praise you and extol your name for ever and ever. Great is the LORD and most worthy of praise; his greatness no one can fathom. One generation commends your works to another; they tell of your mighty acts. They speak of the glorious splendor of your majesty and I will meditate on your wonderful works. They tell of the power of your awesome works and I will proclaim your great deeds. They celebrate your abundant goodness and joyfully sing of your righteousness.

Psalm 145:1-7

Day 2

We were just so thrilled to take our little boy away from Vanderbilt-in our own car. He slept most of the way and it really tired him out. I am assuming all the stimuli were overwhelming after all he has been through. The trip was uneventful. I hated dropping my son and husband at the hospital door and driving away, but we had two little ones who would not make it much longer without some milk and a stretch of the legs. We are very close with the family I am staying with. Taylor has been so kind to have food and baby gear here. Owen has a playmate, and Margot is sleeping the days away. I know she is exhausted from all this. However, I feel much farther removed here from Micah and Matt. I don't have much time to communicate with them, and I am a 30 minute drive from the hospital. If you know Atlanta, this could be up to 2 hours if I leave at the wrong time. I feel like I have deserted Micah. I know that is not true, but it is hard for me to not be by his bedside. I also think I was thinking Micah would not be in a "hospital" hospital. He is still getting vitals, blood draws, people poking in all day long, etc. I am glad they are taking good care of him, but just not what I expected. I know we will find a new groove. It just takes time to learn a new system. Everyone who saw Micah today said he looked great. They see children recovering from ADEM here, and they were impressed by how far Micah has come. Praise the Lord for his healing work. Micah is stronger still today. We have a ways to go before he will run, but he is sitting himself up in the bed, crawling in and out of the bed and chairs, eating a ridiculous amount of food, putting on tons of weight (3 pounds in a week-that is the total he gained in the whole last year of his life!) The steroids can cause swelling and hunger, so our little guy may actually catch up to most other 5 year olds out there. His talking is better too. He is still very tired. We are still getting evaluations, so this is low key compared to next week. I am curious to see how he will handle the intense therapy. We will meet with the team Wed. to discuss the exact treatment plan and to get a tentative release date. In the meantime, my mom is headed up to help out. I am looking forward to getting to spend some extra time with Micah this weekend and not having to fight rush hours. I will post as I am able, but we have no computer at the hospital this time. Please pray this will go quickly-we are really needing our family together under one roof.

Here!

Quick note to let you all know that we are here safe and sound. It has been busy getting settled with the little ones here by myself, and Matt said Micah was so tuckered out by the time they got to their room. Tomorrow, Micah will have assessments, and we hear the weekends are low key. This will hopefully give him some time to ease in before the real therapy begins on Monday. I will go visit him tomorrow and let Matt spend some time with Margot and Owen. We are so glad to be together in the same city, but it is really hard for me to not be with Micah all the time. I am, again, so thankful for Matt and the relationship he has with our little boy. The nurses at the hospital said Micah is doing great. We are so proud of our little guy! Several have asked about where we are staying. I obviously don't want to post any information on the blog since it has become so public, but if you want to send me an e-mail, I would be happy to give you our address.

Funny story (well it is now anyway): We had been here less than 10 minutes when I dropped my phone in the toilet. Are you kidding me? I quickly put it in a bowl of rice and a couple of hours later, it is back up and running. Thankfully, I won't be making a trip to get a new phone tomorrow.

Packing the Car

Tonight, Matt and I are both home (for the second night in a row!) Aunt Maggie (Matt's sister who is also a nurse at Vanderbilt Children's) was off this week and has gone above and beyond the call of duty to help us care for our son. She is spending the night with Micah while we get the car loaded for our trip. Funny, it is hard for us to be anything but joyful. We are just so thrilled to see our little boy talk, laugh, and walk. I seriously wondered if I would ever hear him talk again last Tuesday. We are excited to see what the next few weeks hold. Micah told me tonight that he was about 50% healed. I asked if anything hurt and he responded "no, but I want to, like, run again!" He requested that the thousand people who were praying for him continue to do so. I have no doubt you all will. I also inquired as to whether Micah was scared. He said yes because of the IV. I had good news for him: no IVs in rehab! I also asked if he knew who would be with him (I was talking about Matt), and he informed me that God and Jesus would be there. Yes, my sweet, sweet, Micah. God and Jesus will be there. I pray every night for Jesus to wrap you up in his arms since I can't. I love you and can't wait to see you run!

A Couple of Videos

First walking (I think this was Sunday)

"Thank you for praying for me."

Micah sat up in a chair last night and ate spaghetti, green beans, and a cupcake!

Qualified!

We are set to leave for Atlanta at 8 AM on Thursday. They are speaking with insurance now, but they are confident it will cover. We may even be able to drive Micah ourselves!

To Clarify

I just wanted to clarify that Micah is not "ill" so to speak any more. We are remaining at the hospital to receive therapy, monitor his food and fluid intake (swallowing and eating have been extremely difficult), and awaiting the removal of his IV and feeding tube. The neurology team told us there is nothing else to help Micah except extensive therapy. We still have no updates on Atlanta and are so thankful that Micah is still inpatient to receive all his therapies.

I actually stayed home this morning. I washed clothes, cleaned and organized, made a healthy lunch, and spent time preparing for our trip. We have wonderful friends in Atlanta, who are going to house us while we are there. Matt will spend the nights with Micah, and I will stay at the Brown's with the other children. We will go visit Micah daily, and I have been told that Micah may even be able to leave the hospital for a couple of hours a day! These are our tentative plans as we don't know this new facility or how things work there.

My brother-in-law and his girlfriend took our car for an oil change and tire rotation today. Owen went to school, and I had a little piece of normal for the first time in two weeks. It is hard not to feel guilty taking time off to recharge when what I really want is for my little boy to be the one able to come home. Alas, I will take this blessing as Margot really needed some time in her own bed. She slept till 9 and went back down for a nap at 10. She is still asleep. Owen begged me to stay home with him for 58 days. I know the others need some time too.

I am hoping to take some pictures today to show you how great Micah is doing. Matt said he was very feisty during his morning therapy session and even threw his toothbrush. I hate that now we have to discern the fine line between defiance and inabilities. It's hard enough to parent when children are healthy, but this is sure to add a difficult dynamic. Pray that we would be encouraging to Micah and that we would be wise in parenting/disciplining him. One of the great benefits of going to an inpatient facility is that we won't also have to be the ones pushing him physically. Also, please pray that we would be able to go to Atlanta-that Micah would be a good fit and that our insurance will approve this therapy.

No Real Answers

We were eagerly awaiting today as it seemed as though we were really going to get rolling with the move to Atlanta, etc. Our pediatrician is ready to release Micah over to the rehab hospital, but it seems as though these things take a while. I spoke with our case worker today and first, they have to have a representative from Atlanta come here and evaluate Micah to see if he is a good fit for their facility. Next, we have to find out about insurance, then appeal if they deny etc. I am so thankful that someone is handling all that for us! So, it is a waiting game now. Matt thinks we will be leaving Wed. but I am leaning more towards Thursday. Of course, we could leave as early as tomorrow. Now, we are busy making plans to leave for probably two weeks to a month. Matt has taken two weeks off work and will ride with Micah to Atlanta in the ambulance. I will possibly wait on my mom to come back and help me get to Atlanta with the other kids (Thursday or Friday) or leave close behind Matt and Micah-it depends on how brave I am. Please pray with us that Micah will make quick progress and that we will indeed be there two weeks or less. It will be really hard to split our family up and for me to care for an infant as well as a child in the hospital with no husband, and of course I would miss Matt and Owen like crazy. From what we have heard, the place in Atlanta has wonderful success rates and is an excellent facility. We obviously want our son to reach his maximum potential and we strongly feel that inpatient therapy is what is best for him. He is still making progress now with his therapists at Vanderbilt, but at the rehab hospital he will have this type of therapy all day. Today he looked at Where's Waldo for quite a while on his belly and up on all fours. He also took a stroll around the halls, which Matt claimed wore him out. He was eating much better today also. We are just so thrilled to see Micah progressing. He made several jokes today, laughed a few times, played with Owen this afternoon, and became very feisty in the bathtub this morning. It feels so good to see glimpses of the Micah we have raised for the past 5+ years. but I can't help but wonder if he might have some different personality traits after all this as he has been quite the joker today.

Tonight I had a mini meltdown when I got home with the kids. It was the first time I came home to an empty house with no distractions. I immediately felt the weight of packing for 5 people for an indefinite stay during a season change. I yelled at Owen because he wouldn't take a bath with Margot. Seriously, what is my deal? I guess, since Micah is recovering, I decided to have my own pity party. Matt gently reminded me that a few days ago, we were watching our son slip away. He is well now-and getting stronger every day. Praise the Lord! I apologized to Owen-he is very happy I am going to be home tomorrow. I told him we were going to pray for Micah before bed and he said "I pray for him when I am sleeping!" I'll leave you with a verse from a card I opened tonight:

Do not be afraid for I am with you.

Do not be discouraged for I am your God.

I will strengthen you and help you,

I will uphold you with my righteous right hand.

Isaiah 41:10

Decisions

We have been so busy. Among physical therapy, occupational therapy, hour long "feeding sessions," visiting with visitors, traveling to and fro with the other children- time has become a scarce resource. Sunday was another good day with baby steps of improvement. Both motor and cognitive skills are improving bit by bit with some serious effort.
Today will be a day of decisions. When will Micah be released from the hospital? What do you we next? To the inpatient rehabilitation center in Atlanta? For how long? Will our health insurance even pay for physical therapy? So, dear Saints, be in prayer for wisdom as all of these decisions will most likely be made today.

Today

Today, my child walked. Even though yesterday Matt and I said it would be a long time before he would do it, he shuffled himself to the potty and even made a "pee pee." He was also awake almost the whole day. I took my longest break last night into this morning and when I got back to the hospital, I was encouraged. It's funny because after being there a couple of hours I was discouraged again. He seems to be able to talk less and less even though I can tell he has more and more to say. If only he could communicate with us, I feel like this would be tons easier on him. He seems to be able to focus on only one thing at a time as it is extremely difficult to move his body. We are hoping that as his physical movements become easier that he will begin talking a little more.

Today, Micah took his last dose of IV steroid. We are anxious to see how he does now that he doesn't get pumped full of IV Benydryl twice a day. Also, high doses of steroids have lots of side effects. There is no way to know how much the drugs are affecting him at this point so we are curious how tomorrow will be. He will continue on oral steroids for 4-6 weeks.

Today, Micah took bites of food for every meal. It still didn't amount to enough to lose the feeding tube, but we are getting closer.

Today we were also almost guaranteed a recommendation to put Micah in a rehabilitation hospital-the closest one for children is in Atlanta. We now have to make lots of decisions regarding work, finances, splitting up or sticking together. These are things we just don't have a lot of brain power left to do. Please pray for us that we would be wise. We have a case worker who will help us sort through all the insurance stuff on Monday. We don't know how soon we will be leaving but are thinking as soon as Tuesday, but possibly not till later in the week. We will keep you all updated as decisions are made and things get rolling. Right now, I must abruptly sign off due to a prematurely waking baby :) She actually got in bed by 8 and doesn't know what to think about missing that late evening feeding. Be back tomorrow!

What Day Is It?

All day long, I have been trying to remember what day it is (day of the week and month). Has it really been a week since that morning when I drove my child frantically to the doctor after he collapsed? At the same time it feels like we have been in the hospital for months. I am getting used to our new routine and so is Margot. The only person that I feel like is left out of the equation is little Owen. He is truly being such a trooper. I got to read him a story, pray with him, and tuck him into bed tonight which was such a treat. He also came to the hospital today to play a little of the Wii we are borrowing. I wonder how Owen is going to change while going through this with us. I find myself contemplating how the Lord will use this circumstance to shape our family. We are noticing Owen has much more confidence. He was never the best at anything, and now he is the best at everything. We know he will be good motivation for Micah on his road to recovery. We also know that Micah was always so sweet to help Owen when he couldn't do something, and I feel very sure Owen will remember this and do the same. These boys love each other. Owen was sad last night leaving the hospital and Micah gave him a toy dinosaur that Grammy had brought for him. Owen has slept with it since then. Oh, how I long to hear my boys running around the house shooting their cap guns.

Today showed a little improvement over yesterday in alertness. Micah held his head up better today, and when I arrived at the hospital this morning he was sleeping in a much more natural/comfortable looking position. He also was awake most of the day. However, his abdomen was quite distended and hurting him a bit, his liver is swollen (the doctors told us this yesterday), and he wasn't talking/swallowing/coughing as well. It seemed as though it was harder for him to make things click. Every doctor who walked in today said he looked better so that is encouraging. It is so hard to tell when you are there non-stop if he is really making any real progress. One thing we are coming to terms with is that this truly may take a long time to recover. There is one neurologist whom I feel like has been really shooting us straight. He said he has seen worse cases of ADEM, but Micah is up there. He has been telling me all week that this will most likely be a long recovery. There has been no talk of going home, and we are waiting to see if they will try another therapy on top of the steroid, or if they will be happy with the progress he is making. He has 3 more doses of the medicine left before we start an oral steroid to taper him back down for the next month or so.

As far as the highlights of our day: Micah laughed a few time tonight. It is amazing the difference we see in Micah after 5 pm when things slow down and everyone is finished coming in and out of our room. He really relaxes and is ready to have fun. We played go-fish (albeit it was very slow and we had to pause indefinitely in the middle) and he looked at some new Where's Waldo books and was locating the characters. After I left, Matt's aunt and uncle stopped by and Matt said Aunt Wendy really had Micah laughing. His laugh is joy for our souls, and we hope to see more of it in the coming days. Micah enjoyed a few bites of chicken soup and milkshake for lunch and dinner, and we are hoping that he can eat a substantial amount tomorrow in hopes of losing the feeding tube. He is really starting to get bothered by it now that he is awake more.

And now, I must say goodnight friends. Thanks for checking on our sweet Micah, for praying, for sending gifts. We are so blessed and thankful. He is hanging in there and so are Mama and Dada. We pray for continued progress and will expectantly wait for the Lord to heal our baby.