Monday, February 28, 2011

Micah Quote

"We are going to have to get outside"

I said "you are right sweet boy and as soon as they lift you off restriction I am going to stroll you around the hallways!"

Not Quite Midnight!

Thought you might like to peek at our super trooper. He is being so brave and sweet and I tell him multiple times a day how proud I am of him. He hasn't complained once except for saying his hand hurt after his new IV today. And you know what-that vein blew. He was trying to tell us the whole time something wasn't right-poor guy. Last I talked to Matt, they were going to try to start a new one tonight. Micah still is not eating. He was loving his pediasure until he had a bad tummy episode. We don't know if he is reacting to food on an empty stomach or all the medicine. So they will give him medicine to help with his stomach-imagine that. Seeing all this medicine go into my child is hard-I don't even like to give him Advil at home. We aren't getting good feedback when we suggest the feeding tube-apparently the children don't like it. If he doesn't have something tomorrow, we are going to have to do something. The steroids were causing a weird swelling of the face reaction so we had to stop them for a little while. We were feeling discouraged because this is the medicine that he needs, but some benydryl before seemed to do the trick and he was able to finish round 1! I am eager to see him again already. It is getting increasingly harder to walk out of that room at night. Sleep tight my bubsy tubsy-I love you a million badrillion googleplex!

New Medicine

We finally got the okay to start the intravenous methylprednisolone (steroids) and praying they will help recovery!

Neurology Report

Neurology stopped by. They said that Micah's condition is definitely what they would expect based on the MRI. He said that he wouldn't expect to see much improvement for a least a few days. They think we will almost for sure be here the whole week (steroids are a five day course). They think we will indeed start steroids; we are just waiting for the green lights from all parties taking care of Micah. The said we need to be prepared to be in it for the long haul. This could take extensive rehab to get Micah back to where he was-they mentioned months even years and he may possibly never fully recover. We know that Micah is one tenacious little boy and if we can get him healthy again-he will be bound and determined to run around with Owen and get his golf game back! Please pray friends that Micah will improve soon. We hate seeing our little boy like this.

Thought You Might Like To Know

Micah loves this hand held video game. We got it out, and he could barely hold it or press buttons. He was bound and determined to play that game and his little persistent personality shone through as he got those thumbs to push the buttons. He is talking about the cards too!
"Come on Queen!"

Monday Morning Update

I know it is confusing about what is going on with Micah. His diagnosis is still almost certainly ADEM. Overall, Micah is still losing cognitive response. He cannot communicate well, though we see him wanting to. It is as if he can't get his mouth to say what he is thinking, or he is having thoughts but can't interpret them. He did have a menu today for breakfast and read the words apple and milkshake. He didn't know if he wanted those or not (Micah hates apples and loves milkshakes). He cannot walk, sit up on his own or respond to most questions (although a request to know what time it is will almost always elicit a quick glance at the watch). He said he wanted to sit in my lap but when we got him up, he said it hurt and he vomited. He has no food whatsoever in his body so not much came up. We are trying to avoid a feeding tube but may have no choice. He is unable to swallow, so he is drooling. Our hope is that we will be able to start the steroids soon and he will be able to swallow and eat.

We have some of the brightest minds working on his case and they are still processing, researching, and making decisions. We have met with two doctors today and this is what we know: He is still testing negative for all the infectious diseases, but yes this still could be a bacterial meningitis. It is not likely, and the spinal fluid has a "viral flavor" but there is just no way to know. When we reach the 48 hour mark, and the tests are still negative we will begin steroids. Steroids are the first line treatment for ADEM but would be terrible if Micah was fighting a herpes virus. This is highly unlikely because no one has had any cold sores, but we have to be sure.
There is also no way to be able to tell if this is infectious or just post-infectious/inflammatory- hence the masks and gloves. The feeling is that it is post infectious, but we still probably shouldn't have visitors in our room. However, we are up here all day and a walk with a friend would be nice! Something that is different from our original thoughts of the MRI is that Micah does have a significant amount of inflammation along his entire spinal cord. There is also inflammation and swelling of the brain lining and along the brain stem. Basically, some kids pop right back after this and some have to have extensive therapy to learn to walk, talk, etc. There is absolutely no way to know and to be frank, I really could care less at this point. We just want our son to be healthy again. Micah's case is very rare. Our pediatrician said he spent a few hours reading up on it yesterday (so did Matt, so he can talk very candidly with the doctors which I appreciate immensely).
Everyone is asking how we are doing. I get my batteries charged every night as I sleep in my own bed and get to go home and be a mom to Owen for an hour at night, but Matt is growing increasingly weary. It is extremely hard to be up here alone with Micah as I learned yesterday. I will stay here all day and will encourage Matt to go out this afternoon. We are scared, sad, and tired, but also trying to remain positive and getting moments of peace when Micah asks a question about the mL in his IV or tells us what time it is! Some specific prayer requests: that Micah will be able to get some nourishment today in the form of protein and fat preferably not by feeding tube, that we will start the steroids soon and that they will have a positive effect, that Matt and I will keep our heads up and stay positive, that the doctors will make wise decisions regarding our son's care. Thank you all, faithful friends and family. We love you and will keep you posted as we are able.

The LORD is close to the brokenhearted, and saves those who are crushed in spirit.
-Psalm 34:18

Sunday, February 27, 2011

Mom's Midnight Review

No matter how hard I try to get to bed earlier, I seem to always sit down at the computer around the midnight hour. Honestly, I am feeling somewhat de-stressed and don't particularly want to rehash the day before heading to bed. We don't have any new information but are expecting to hear some more news tomorrow. There is a computer in our room, and Matt or I one will update as we meet with doctors and hear more. Tomorrow, being Monday, we will meet many new faces and therefore get lots of other opinions and brilliant minds working hard to help our sweet bubs. Please feel free to comment with any questions, and we will try to answer them the best we can. Thank you all so much for loving us through prayer. It is always such a treat to open e-mail and read all the kind words. Tonight I read some to Micah as well. And as I say goodnight some things we are thankful for:
-Grandmas! They are helping so much with our other children, comforting us, and running errands and my household. What on earth would we do without them?
-A wonderful hospital
-Kind, compassionate doctors
-chocolate milkshakes (Micah actually drank about 1/4 of one today. I think we may order one for every meal tomorrow!)
-A delicious dinner from Zoe's kitchen from my brother and sister-in-law
-my nephew, "mister man" and his chubby cheeks that I got to see for the first time in two months
-a husband who loves his son and is sacrificing everything to be with him around the clock
-The Lord's peace that comes just when we think we are really going to lose it
-text messages that keep coming and reminding us that we are so loved
-Golf (The tournament today actually had Micah's attention and he would open his eyes quite frequently to watch Bubba)
-Margot's disposition (It is evident the Lord knew she would have to be content to sleep in her carseat and hang out for long hours in the hospital. She has been such a champ.)
-Owen's disposition-we have heard nothing but good reports about what a sweet boy he has been. He knows he really has to step up to the plate right now and be the best brother he can be. He had a pretty good meltdown tonight when we got home-but hey, I have had my fair share too. Once I assured him that I would be the one to put him to bed tonight, he was good to go.
-That the Lord is not surprised by this. He has Micah in his hands, He knows Micah's illness, He is the Great Physician, and He will not leave us or forsake us. Micah says "yes" to a few questions one of them being "do you want us to pray with you, Micah?" Praise the Lord for my little boy's love for Jesus!

What We Know

Hi faithful friends! We are very encouraged by your prayers and are so thankful for you . I told Micah today that he must have hundreds of people praying for him even all over the country! We have been introduced to new teams of doctors today as infectious disease has joined the company. We are trying to rule out infectious diseases or pinpoint one so that we know where to go with treatment. The truth is everyone seems somewhat baffled. The good news is there is no tumor etc. The bad news is we don't know Micah's prognosis. Some kids just keep getting better and make a 100% recovery; others have lasting effects be that mental or physical. There is no way to determine what kind he will be and from my understanding there is nothing that has been shown to dramatically affect the outcome. There is talk of ADEM (he recommended mayo clinic's sight for information), mono, flu, meningitis, tick born illnesses, hand foot mouth, etc. Micah is more feisty today, and still running a fever. I sent Matt home to recoup for a while as he was growing tired having not left the hospital. He will be back soon with Margot and Owen for a visit. We are growing weary, friends. Being up here and focused on only Micah has made the severity sink in for me. He is still so sick; I am very scared. Seeing doctor after doctor look in bewilderment is frightening. Please pray for strength. They are making it seem like we may not get to the bottom of this for a little while. We are praying that is not the case, but are also preparing to be here for the long haul. They have also mentioned continued thereapies even after we leave the hospital. However, we don't even know how to prepare for the long term because there is just no way to know. We will continue to wait, trust, and pray. We have moved to a real room now-but aren't really sure on the visitor policy for Micah: I know everyone is wearing masks and gloves etc. when they come in. The facility here is wonderful and there are lots of break rooms, palyrooms, etc. and as time goes on, I am sure Matt and I might like some visitors while another family member could sit with Micah. We ask that you call/text/e-mail first. There are lots of doctors in and out and we obviously want to be very thorough with them. Thank you for lifting our family and sweet Micah before the throne. God is good all the time and we will continue to praise Him.

Saturday, February 26, 2011


It is nearing midnight and I am exhausted. It was a long day of waiting and finally tonight we have a few answers. Our pediatrician saw Micah this morning and was just as upset about his worsening condition as we were. He was definitely even worse than yesterday, and he suggested neurology taking a look at him. The neurologists agreed that things weren't adding up and ordered a brain scan with his back scan on the MRI. Obviously we were terrified at what they might find but thankful to have more thorough testing done. He finally went back at 4 o'clock for the MRI and was there for 3 hours. Our families were with us, and we went out to dinner down the street. It felt nice to feel normal for a little while and get something good to eat. We are floating between moments of intense fear and sadness for our little boy and times of numbness where everything feels surreal. The doctors are on top of Micah's case, and our pediatrician is doing an amazing job managing Micah's care. We feel very blessed to be in such a great facility with such great doctors. Tonight the MRI showed nothing abnormal. We were relieved to have MS, tumors, etc. ruled out, but are baffled as to what is making our son crippled and lethargic. They went ahead with the spinal tap. Matt called me just now and told me his white count is elevated indicating possible encephalitis/meningitis. These are just guesses, and they are going to be continuing to get to the bottom of Micah's mystery disease. They have started an intravenous antibiotic which may or may not help. We don't know if this is viral or bacterial yet. Micah will be in the hospital for at least two more days. Thank you all so much for your prayers and kind words. I keep thinking he is just going to get up and start walking, and this will be all behind us soon. That is our prayer. I'm home again tonight to sleep with Margot and am headed back in the morning. I had some sweet time with Micah in his bed today while Margot napped. He held my hand and it felt good to snuggle my baby boy. Micah and Matt played some cards and we all enjoyed a little of the golf tournament while in and out of sleep. Hopefully tomorrow will be even more restful as they have moved us to a real room and we are out of the ER.

*Memorable moment: We were having a hard time waking Micah in the recovery room after the MRI. He wouldn't open his eyes for anything-not even a coke icee. I had been wearing his watch for him during the test and I said "Micah, look I have your watch and am going to put it back on you." He immediately cracked his little eyelids to check out what time it was! For those of you that know Micah-this is so him and hilarious to see come out in this situation. Matt and I had a good laugh and agreed we would never forget the boy who wouldn't wake up for anything but a glance at his watch!

Friday, February 25, 2011

Unchartered Territory

My firstborn is in the hospital. Much like all young children, he has been on and off again sick for about a month with the various viruses of the winter. The last few days he has had some disturbing symptoms, and I have been back and forth to the doctor with him. Today, when I asked him to stand up for me, he stumbled and collapsed and was slurring his speech. I scooped him up and walked him straight to the car and buckled him in. Then I frantically called Matt (he couldn't understand a word I was saying but he knew enough to leave work and start driving to the doctor). I proceeded to grab the other two and get them buckled, grab a pack of diapers, coats, etc. and rush out the door. I started driving to realize we had no gas and literally coasted into the nearest gas station. I called our pediatrician and he told us to go to the his office first (quick note: always do that if possible because when we did go to the ER it was smooth sailing with no lines because the doc. called ahead). Our doctor looked him over and agreed that we needed to go over to Vanderbilt Children's hospital. They started an IV, X-rayed his chest and back, and drew blood. We aren't really sure what he has, but have been told that his blood work is pretty normal (a few elevations that are probably due to the cold he has been fighting the past week). They are suspecting something called discitis, and he will have an MRI tomorrow to hopefully get some more answers. Micah was miserable today and in a lot of pain, but after I left tonight, the pain meds had kicked in and he played with Matt and had a snack. I will update as I can. It is so hard to have a nursing infant, a lonely and needy middle child, and a super sick big boy in the hospital. I am so torn as to where to be. Matt is with Micah overnight. Margot and I will head over first thing in the morning, and my mom is here to give Owen some TLC. We are praying for a speedy recovery, comfort for Micah, and wisdom for these doctors.

The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.
-Psalm 18:2

Monday, February 07, 2011

4 Months!

Okay, seriously Margot, slow down... please! I am pretty sure time speeds up a little more with every baby. As much as I love seeing you grow, learn, and experience the world, I just want you to stay little a little longer.

We have had quite a busy month running you and your brothers to the doctor. Owen was the first to get the bug about 3 weeks ago, followed by Micah, and then you. We did our best to keep you well, but the virus won. On our second trip to the doctor with you, we found out you had RSV which is a fancy name for a really bad cold. You had some familiar breathing difficulties, so I am guessing you will be like your brothers with these colds-croupy and wheezy. The doctor commented that at least you were a "happy wheezer." And, oh how thankful we were for that. You are finally well, and I am sure your immune system will be all the better for it. Aside from being sick here are a few other things about you at four months old:

-You love to be sung to, especially the goofy song Mama made up to the tune of "la cucaracha"

My Margarita, Sweet Senorita!
Oh my Margot, baby girl.
I love you so much, my sweet sweet baby,
Oh, my Margot baby girl, cha cha cha!

-You no longer have colic. It is so nice to have a happy girl in the evenings! You now go to sleep around 8 pm. It is still hard for you to fall asleep for the night though. I can't figure out why as you put yourself to sleep so well during the day. Sometimes we rock you bed back and forth and pat your back, and laugh at how we would have never done this for your brothers at this age. You are a bit more spoiled than they were-imagine that. Once you settle down though, you are down for the night. I don't usually hear from you until 6 am. You take two naps during the day and sometimes a cat nap in the evening. You eat roughly 5 times a day now and are getting really big. We postponed your well check until you are well, but you were in the 75% even when you were sick. I see you eyeing table food too and can't bear the thought of you soon being old enough to try solid foods.

-You are beginning to really push with your legs to a standing position. I think it is about time for an exersaucer and johnny jump up.

-You have really found your voice and squeal often-when your happy, when you are playing on your play mat, when you want attention. Your laugh is a sweet little giggle, but we don't hear it all that often. You are a pretty serious baby.

-You love when I read to you. We have a few books that we read everyday-you especially like the one with all the babies.

-You love to roll back and forth on the floor, but still need a little nudge or hand to make it all the way over.

-You aren't too interested in having toys yet. You are pretty happy with your fingers and a burp cloth or blanket to chew on.

-You are losing your hair, especially on the left side. I like to call this your "Willow Smith do". You have gained a significant amount of fuzz to replace the hair you lost, and it seems much lighter in color.

-You are fascinated by your brothers, especially Micah. Owen sometimes scares you with his loud talking. I can sympathize-we are working on our inside voices.

-You are a huge Mama's girl; and yes, that does make me pretty happy!

-You are so loved, sweet girl!

Enjoying the Weather

This seems like it has been a rough winter as far as being wet and cold. So, yesterday afternoon we all headed to the park to play since it was 50 degrees and all. They say there is more snow on the way, so we wanted to get all our energy out. I am just not a winter person. I asked Matt what he thought about opening a Spectacle Shoppe in Jamaica the other day; he thinks I'm kidding.

Thursday, February 03, 2011


What sickness?

Our sweet baby girl, although being recently diagnosed with RSV and a double ear infection is such a trooper. Thankfully this little one loves the bathtub, because we have spent our fair share of time in a steamy bathroom helping her breath a little easier. But, who wouldn't love an aromatherapy soak, in a sauna, followed by a chamomile and calendula lotion massage? Unfortunately there is no magic cure for this, and we just do what we can to make her comfortable and wait the next couple of weeks for a (hopefully) full recovery. Thankfully, we can treat the ear infection and she is sure to be feeling better with at least one thing off her plate. Matt rigged her bed up on a 45 degree angle, and she slept pretty well last night. It is the mornings that are rough as she works so hard to loosen up all the phlegm that has settled through the night. We are so thankful for good doctors, good medicine, and a happy baby as we trudge through this mess. Owen said the other day "Mama, what if God healed us immediately when we asked Him?" Oh, wouldn't that be wonderful! "We are thankful that he heals us at all," I told him and "we will keep asking him every day to continue to do so."