We're Here!

We made it to Detroit around 6:15pm tonight and checked into the Ronald McDonald House. We were going to go to the regular McDonalds down the road to eat but we ended up having a (free) yummy spaghetti dinner here. It was delicious! Micah ate a lot too so that was good. We did go to McDonalds and got some ice cream and Micah played a little in the playland. Then we drove around downtown Detroit and looked at the buildings. Micah has been playing with some of his goodies from everyone. Thank you to everyone who has given him stuff. Such a deprived boy he is:) Right now Micah and Daddy are reading some books and getting ready to go to bed. Junior Asparagus is serenading us in the background as well:)

Maelea is still sick. She had over a 104 degree fever today when I left her:( I know she is in good hands though with Grandma and Grandpa Martin.

Things you can pray for:

Micah not getting sick (what Maelea has)
Smooth surgery
For Micah to eat when he is supposed to
No complications
For Micah to not be scared when he wakes up
Safe travel for family and friends
Anything else you think would be helpful (I can't think straight right now)
Maelea to get better so she can come visit and cheer Micah up!
Also, for me to be strong until he is out of sight because he is so sensitive.

Surgery 8:30am

Surgery is going to be starting at 8:30am tomorrow. Right now I am sitting in the lab at Bronson waiting to get my blood drawn. I just drank that yummy orange stuff! We are all set to go I think. Maelea got up around 10:45. She really does not feel well still but she is up and riding in the van with Dan and Micah doing some last minute errands.

Surgery Time... still waiting

I called and I guess another department is going to be calling us SOMETIME today with his surgery time. I will post as soon as we find out.

Maelea

Well, Maelea is really sick. She woke up at about 5:30am and was throwing up in her bed. This is the first time I have ever had to deal with this and I am not good with it! She was burning up with a fever. We gave her a bath and changed her sheets and gave her some Tylenol and put her back to bed. She is still sleeping right now. I really hope this bug is confined to just her body! Please pray for that because any of us getting sick would be really bad. I called about the surgery time and they don't open until 9:00. I will post here again in a few minutes.

Goody Bag!

Well, Micah was sent home with quite the loot today! Here is a picture of all of his stuff from school. He was so excited!! He already put his new Lofty and Scoop in the case so they are missing from the picture. Thank you to everybody who had something to do with his gifts! He also went through the picture book and said everybody's name and was so excited.

When I went upstairs to see how Maelea was doing after sleeping for 3 hours, I found a "not feeling very well" girl. She was just lying there awake in her toddler bed. NOT a normal thing. So I felt her and knew right away she had a temp. It was over 100 so I called the doctor. I wasn't so worried about her but I didn't want Micah to get sick before his surgery. Well, I took her in tonight at 7:30 and they are treating her for a sinus infection. She has had a really yucky nose for a few weeks now. She has a fever again right now. Micah should be safe as long as they are not in each other's face.

Tonight, Micah got his pre-surgery haircut from Aunt Amanda. It looks really nice. I will post some pictures tomorrow. He is sleeping right now. Well, I guess that's all for now. We will find out in the morning what time the surgery is scheduled for. I will post that as well.

Lunch

Maelea and I stopped by to see Micah for a minute and I took a picture of him eating his lunch. He is so happy at school.

Last Day of School.... for a while.

Well, Micah is off to school right now. He knows it's his last day for a while. He was very happy and in a good mood. He has been helping pack up his pajamas and some toys to take with us. I am just about done with all of the laundry. It's like packing for vacation... but NOT! We all need our stuff packed. Dan now has a pair of "Mickey's Mouse" pajama bottoms to match Micah! Thanks Grandma Martin! I will be sure to post a picture when I catch him in them. Maelea and I are going to go to Dollar Genaral here in a few minutes and see if I can find a cheap single air mattress (even a pool float will do) for me in case the spot in Micah's room for me to sleep is not cushy enough. It's not easy being pregnant and sleeping sometimes. I just want to be prepared. And, if I don't use it, Grandma Cutler has a pool now! Yes, you're all invited to come anytime and use it... right? Ok, I better go. I will post more later today.

Sunday Update

We had a good day today. Micah didn't wake up until 10:30 this morning! He needed to sleep apparently. After church, Micah and Maelea spent the day with Grandma Cutler. Dan and I spent the day at church with our small group painting a classroom. Both Micah and Maelea now have light-up shoes! Thanks Grandma! Not too much else to write about. Only a few more days. Keep checking in for updates.

Micah's Tree

Micah brought home a tree from school for Arbor Day. He is in his pajamas in these pictures because he ALWAYS wants his pajamas on lately. The first thing he said when he got home from school was "jinas on." We just planted the tree. I hope this one grows because the couple hundred that Dan planted about seven years ago never grew. Sorry about the sideways pictures. I can't figure out how to make them the right way. Let me know if somebody knows how. Thanks!

Camping

Getting ready to leave.


North Country Trail. Chief Noonday Chapter. Barry State Game Area. Parked at McKibben Road trialhead. Walked about a half mile north to camp.



Ready to walk


The Camp


Cooking Dinner- Micah LOVES to cook!


Waking up


Cooking Breakfast


North Country Trail Marker


Hiking Out

Pictures from the past

Wow, this was a lot more difficult than I thought it was going to be! I tried to find a picture of all of the immediate family. I came very close to including everybody. I'm very sorry Great-Grandma Blocher was unable to be found among my digital pictures. Included in these pictures are: Great-Grandma Martin, "Papa" and "Mama" Martin, Aunt Amanda, Uncle Kevin, Aunt Jenni and Uncle Josh, Mom (me), "Mama" Cutler, "Papa" Cutler and "Mama" Nancy, "Papa" Martin, Dad, Great-Great Grandma Cutler (who passed away 1 month exactly before Micah was born), Great-Grandma Jimmie, Great- "Papa" Cutler, and Great-Grandpa Dolbee. These are Micah's heritage. I hope you enjoy them. I do have plenty of other pictures that I will be posting as well.

A Good Day

We had a good day today. When Micah got home from school, Daddy took him for a bike ride down the road and then he said he wanted to go camping. So of course Daddy took him camping tonight! They hiked about a half of a mile from where they parked and set up a tent and made dinner. Dan was really happy to use his backpacking stuff. When I talked to him, Micah was trying to get his sleeping bag rolled out. We had some other good news today. Maelea went on the big girl potty! I was not ready for this at all but here we go. After she went, she was clapping her hands and saying "yeah!" I know I am lacking some pictures lately but I left my camera at Dan's parent's house! I will get it back soon though.

FYI

If you are just now joining us, make sure you go back and check the first entries because that is where you will find Micah's history. It is very encouraging to see that so many people have checked this site but at the same time it does intimidate me:) I know I have high school friends, college friends, family, extended family, far far extended family, church friends, school teachers, and probably people I don't even know reading this. We finally woke up Micah tonight after 7pm and went for a bike ride and had some ice cream and talked with some friends. He was ready to go put his pajamas on after a while. I hope tomorrow he has his full energy back. He was crying tonight when we put him to bed and holding the back of his head.

I talked to the Doctor!

Micah has no other problems with his spine. This is great news! They were looking for a syrinx or a tethered cord and he has neither. I only talked with the Doctor for about 10 seconds so this is the only information besides finding out he will be there from 5-6 days but possibly only 4 if he does really well. Micah is crashed on the couch as I type. He was so tired after he got up this morning. I almost didn't send him to school but he was so sad and teary eyed when I mentioned it that I didn't have the heart to keep him home. I carried him off of the bus and he fell asleep 5 minutes after we got in the house.

Update

Yesterday went just fine. We got there early enough to get a mini tour of the hospital where Micah will be staying. We got to see the 5th floor and an inpatient room. We also got to see some of the Ronald McDonald house. Micah did great during the MRI and slept until about 9pm when we went to "Donalds" as he calls it. He was still very floppy and unable to even hold his head completely so that was somewhat difficult. He seems great this morning and is sporting his brand new "Mickey's Mouse" pajamas. I will update more after I talk to Dr. Ham about the MRI.

MRI tomorrow

We will be going to Detroit for Micah's MRI tomorrow. We should have final surgery plans after this is done. While we're there, Dan and I are going to check out the hospital as well as the Ronald McDonald house to kind of get a feel for things. I am trying to plan for next week buy getting some things for Micah when he is recovering like activity books and CD's. I went to some garage sales this past weekend and found some Sesame Street books. He is really into Big Bird right now. Dan's mom is making Micah 3 sets of summer pajamas that button up the front- Thomas the Train, Cars, and Mickey Mouse. He will not be wanting anything to be pulled over his head for a while. He also loves being in his pajamas "my jinas" as he calls them.

Bike Ride

We rode our bikes to get some ice cream last night. The kids really like riding in the cart together especially when Daddy goes over all of the bumps!

Sandbox Fun

Micah and Maelea are really enjoying this nice weather today!

A Bit of an Explaination for You:)

Chiari Malformation

Chiari (kee-AR-ee) malformation (CM) includes a complex group of disorders characterized by herniation of the cerebellum through the large opening in the base of the skull (foramen magnum) into the spinal canal. The herniated tissue blocks the circulation of cerebrospinal fluid in the brain and can lead to the formation of a cavity (syrinx) within the spinal cord. There are three main types of CM. CM1, the simplest and most prevalent form, is generally considered to be a congenital malformation, although acquired cases are recognized. It is rarely apparent at birth.

Patients with CM1 may experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.

How common is Chiari malformation?
Until recent years, CM1 was regarded as a rare condition. With the increased availability of magnetic resonance imaging, the number of reported cases has risen sharply. Current estimates range from 200,000 to 2 million Americans with the condition. Genetic studies spearheaded by Dr. Milhorat support a hereditary tendency with a transmissibility rate of 12 percent. Women are affected three times more often than men. Approximately 3,500 Chiari operations are performed each year in the United States.

People with Chiari malformation type I also can experience:
Neck pain (running down the shoulders at times)
Unsteady gait (problems with balance)
Poor hand coordination (fine-motor skills)
Numbness and tingling of the hands and feet
Dizziness
Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
Vision problems (blurred or double vision)
Slurred speech
Less often, people with Chiari malformation may experience:
Ringing or buzzing in the ears (tinnitus)
Poor bladder control
Chest pain, in a band-like pattern around the chest
Curvature of the spine (scoliosis) related to spinal cord impairment
Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep
Some people have occasional "dropping" episodes — feeling faint and unexpectedly collapsing to the floor, losing consciousness for a few seconds.

All of this information was taken from The Chiari Institute website as well as the Mayo Clinic website. There is a ton more information out there but I wanted to put a brief (haha) explaination up for you.

Out for a hike.

We went to the Otis Lake Nature Preserve a few days ago and Micah walked the whole thing!!! It was over 1 mile. He had a great time and so did Maelea.

The story of Micah

I am going to try to give a quick summary of Micah's life in one post... this may be difficult.

• Micah was born full term (4 days late) and weighed 6lbs 1oz
  
• He had fast respirations so I was unable to feed him for several hours


• Low temperatures


• Hypoglycemia (low blood sugar)


• Was unable to feed due to lack of blood sugar... or so we thought


• Had to stay in the NICU for 4 days

• Had to be woken up for feedings because he slept so well


• First ear infection (double) at less that 6 weeks


• First pneumonia at 6 weeks (2 nights in hospital)


• Continued to have ear infections all the time


• Was very small for his age but super cute!
  
• Sat up at 6 months
  
• Had another pneumonia
• Loved sweet potatoes!!! He turned orange and was tested for kidney failure!!! :)


• Tested for CF (cystic fibrosis) and was negative


• Crawled at 10 months


• Hospital stay at 11 months for high fevers (105.7)
  
• Said some sounds at 12 months
  
• Hospital stay at 13 months for 3rd pneumonia and was tested positive for CF, also had a CT scan of his lungs to see why he was getting pneumonia so often. The pulmonologist (lung doctor) did not believe that he really had CF. As far as we know, Micah does NOT have CF. Was also found to have a broken collar bone in the chest x-ray before he was admitted to the hospital. (He fell down 3 stairs the week before)


• Worked up (tested) for immune deffeciency and was found to be IgG4 deffecient


• Walked at 15 months


• Not really babbling


• Extreme fear of water (would not sit down in the tub even!)


• Possible night terrors


• Would wake up screaming in the morning and I would have oatmeal ready to shove in his mouth because that would make him stop


• Had ear tubes placed at 18 months


• Tested for sugar problems (because of the screaming in the morning, we thought possibly low sugars) was found negative


• Became a BIG BROTHER!!


• Referred to Early On for speech evaluation at 24 months (evaluated at 12 month level)
  
• Had weekly visits from Early On to help with talking and communication


• In January of 2006, was hospitalized with RSV and pneumonia. Had blood drawn to do genetic testing for CF to have a final answer and the hospital somehow did NOT send the blood in for testing... so we still don't really know for sure.
• Was told sometime between now and spring that Micah was either autistic or deaf (?!!)
• Had hearing tested and failed
• Had tubes put in again and hearing was better
• Went to U of M for a second opinion and his hearing was good
• "Fell" somehow and cut between his chin and mouth and had 9 stitches (did not help the talking or eating so much)
• Went to U of M for a speech evaluation and was found to have speech apraxia
• Speech pathologist from U of M referred us to neurology to have an MRI done to make sure something else was not wrong because he did have speech regression at one time (would take 2 months to get in)
• Eyes started crossing
• Went to opthalmologist and started patching (not fun)
• Referred to a geneticist to rule out anything else (would take 3 months to get in)
• Had a BAER hearing test along with an EEG to rule out seizures
• "Fell" again and cut his head by his eyebrow, had it glued this time
• Had another EEG because the first one was questionable (he was fine)
• Started speech therapy at the school in the Fall of 2007 and was suggested that he be in the Pre School for special education
• Started school and LOVED it!!!
• Went to U of M for neurology and they did NOT want him to have an MRI but wanted to wait another year because he didn't really have any symptoms that would warrant an MRI
• Went to the Geneticist and they said "he looks fine" (I'm not kidding either!)
• Continued with school and started learning his ABC sounds and was talking more. He loved going to school.
• Was evaluated by the OT at school because of possible swallowing problems that we were noticing. He also would choose to mainly eat soft foods like apple sauce, pudding, yogurt, cottage cheese, etc. He was just fine during the evaluation.
• The opthalmologist finally saw something with Micah's eyes and put him in bi-focals
• Had a swallow study done at the hospital and he did not cooperate so we did not get any information. I could have had them put a tube down his nose to his throat but I honestly thought that too much had been done already and nothing had been found out so I just said forget it! The speech therapist in the room suggested that he has acid reflux because of what I described to her. He started taking prevacid which did seem to help.
• This was about the time when I said NO more testing until something else happens.
• So.... February 22nd, 2008 Micah had a seizure at school and stopped breathing. He was taken by ambulance to the hospital and nothing was found to be wrong (besides having a seizure.) He did say that he hit his head and all of the other kids said so too. He would point to the base of his skull above his neck. There were no marks or bruising there.
• I told the pediatrician that Micah was going to have an MRI now since he had a seizure. They said "I can see there is no point even arguing with you on this one." :)
• The next weekend Micah was throwing up and had diarrhea for 4 hours continually so we took him to the ER because it could possibly have been from another seizure or something else neurologically wrong. He had never thrown up before now. He was fine neurologically and not dehydrated so we went home.
• Had MRI and was found to have Chiari 1 Malformation (8mm) as well as some blockage of CSF (cerebral spinal fluid) at the foramen magnum (hole in your skull where the brainstem and spinal cord meet)
• To finish out this long summary, we ended up at Detroit Children's hospital with Dr. Ham who is going to be doing a Chiari decompression surgery on Micah on May 1st, 2008.
• Micah will be having an MRI on Tuesday, April 22nd to check his whole spine as well as a more detailed CSF flow study before the surgery.