Day 6- Snuggles galore!

Malachi had a wonderful night. As soon as his high fever came down he got to drink some juice and that made all the difference in the world! He was up for a few hours in the middle of the night and in some pain. Morphine was given around the clock every 2 hours. He was in lala land.

Today we were focused on him waking up more and starting to move his limbs. Physical therapy came in to see if he could sit up unassisted. He did great. So she put him on his stomach and he transitioned to sitting like a champ. She was a little impressed. Then she said lets see if he will stand...and he did!! She was amazed. And I beamed proudly saying "thats Malachi, get use to it." It was such a good feeling.

He is way more swollen today, which it totally normal. Here are a few pictures.

Sleepy boy!!

Oh my poor, swollen boy!!! 

This is what we did most of the day...snuggled and watched cartoons!!

Malachi and daddy took a little nap right after this.

This afternoon Malachi was moved out of the ICU and onto the neuro floor. Dr. Smith was in for a visit and said that we should expect to be discharged sometime this weekend! WOW. We still need to stay in town till the 9th, just in case something happens. We are excited. He would be excited if he had any concept of time. Other good news is he is needing Morphine less and less. He is going about 4 hours between doses and since he is on the floor now, he can be off the monitor during the day! All he has on is his IV fluids. So very exciting! 

One day at a time, thats how we walk. Malachi will beat Moyamoya!!

Like a flood

I have no words that can truly express how we feel right now. Seriously.

What Malachi underwent today is nothing short of a miracle, a little glimmer of God's healing hands. I'm overwhelmed with joy, peace and thanksgiving. My eyes are still flooded with tears. Amazing.

It's hard to think about what really happened today. Dr.Scott and Dr. Smith opened my son's head and stitched (with a thread LESS than the thickness of a human hair) a healthy blood vessel to his brain. The slightest bump, jiggle or twitch could have killed him... instantly. Wow, it will amaze me for the rest of my life.

He is now equipped with 8 (yes 8) titanium plates (they look like prongs that hold the back of picture frames on) and 16 tiny screws holding them in place. He has healthy vessels that, with time, will grow into his brain and provide him with adequate blood flow. It's all to overwhelming to even think about.

So, until I can gather my thoughts better, I will leave you with a few pictures of Malachi.

The swelling has started in the picture above. Tomorrow his eyes will most likely be swelled shut. You can hardly tell in this picture but he is really swollen right by his ears and temple.

Hes gonna have the coolest hair cut on the block for a few weeks until it grows back!!

Day 5- Surgery day

7:40am- Malachi is in surgery. We are in the waiting room as we speak. We continue to be so reassured that we made the right decision. The staff here is incomparable!! I'm willing to be that there is not a better children's hospital in all the world. They have treated us and Malachi with love, compassion, strength and a gentleness that we have never experienced. I am still in awe.

There are 3 nurses in the waiting room who will call the OR every 90 mins and get updated. They expect the surgery to be done around 1pm. There is till a chance that they will not be able to complete both sides today, but Dr. Scott remains hopeful. Malachi is the center of attention here and he is loving it.

Malachi was all smiles this morning and enjoyed meeting all the Docs and nurses.

The markings on each side of his head. I believe they are numbered 1 and 2. They are starting with the left side. I will update again soon!!


9:25am- Just got an update. They made the incision on the left side at 8:52am. They report he is doing wonderfully. Currently they are working on detaching the artery. Thanks all for now folks!


11:00am- The left side is done!!! Dr. Scott just came to speak with us. He said the first side went wonderful. Malachi's blood pressure was all over the place but the EEG monitor didn't show and change in his neurological status. Dr. Smith is currently working on the right side. I will update as soon as we hear more.


1:15pm- Dr. Smith is about 1/2 way done with the second side. He anticipates being done in an hour. I will post again quickly when we get word that surgery is complete and then probably not again until later tonight. 


2:10pm- Done...all done! So thankful for a successful surgery. We have no words...just tears of joy and overflowing thankful hearts!!! 

Day 4-Nothing big

We didn't do a dang thing today, and thats just the way we wanted it. We ate breakfast, lounged around in pj's watched tv, played and just enjoyed time together. Ahhh...it was bliss.

As I type this I am sitting in Malachi's hospital room. He is fighting sleep but content in his crib playing. We have already met Dr. Scott and Dr. Smith. I was and am still in awe. These 2 men are God's gift to our family. We are very, very thankful that we are here in Boston.

Surgery is at 7am tomorrow morning. It sounds like they will be starting with the left side of his brain first followed by the right side. Each side takes about 4 hours, so we are looking at a 8-10 hour surgery when you include time for sedation and prep. I will be sure to update this as we hear things. We love you all and thank you for the many well wishes and prayers.

Please continue to pray for our little fighter. Here are a few specific prayers requests.

*Pray for the surgeons, nurses, anesthesiologists and all others involved with the surgery. Pray for steady hands and strong minds. Pray they get a good nights rest and they all get to the hospital safety tomorrow.
* Pray for Malachi, as he is going to endure all the physical aspects of this. Pray that he gets a good nights rest. Pray that God allows both sides of his brain to be operated on tomorrow. Pray for no more strokes.
*Josh and I need prayers for calm minds. We are worried and scared, please pray God gives us peace.
*Pray for our families as this is so difficult for all of us. Continue to Pray for Nana who is fighting her own battle with her heart right now.

Tomorrow is the day we have been waiting for, praying for and fighting for. We never knew where this ride would take us, and although it has been difficult at times, we are so thankful we decided to follow God and get on.

Malachi will be Moyamoya and when he does we will give all the Glory to God!!!

Day 3-on the cape

Ah yes, June 27th, the day of my birth AND my golden birthday. Today we packed up and headed to Cape Cod (Falmouth to be exact). We had a blast.

Falmouth was full of charm and little shops. We found a fun toy shop and got Malachi a few birthday gifts. Eli got a few just because his grandma loves him gifts as well.

First stop was the beach. It was a little disappointing, we later found out that this beach is one of the worst in the area. But it was neat because we could see Martha's Vinyard. 

It was Malachi's first time in the ocean.

And Elijah's too.

Malachi loved it.

While Eli preferred to hang out on the blanket.

Malachi not only loved drinking the salt water, he also enjoyed snacking on some tube shaped seaweed. Yummy.

After the beach we grabbed lunch and walked through town and then headed home.

When we got back to Boston we decided to drive and find Harvard. It was crazy busy and we couldn't find a parking spot so we did the driving tour.

 This is a church on the Harvard campus. It was amazing. 

We got back to the hotel and got ready for dinner. My mom watched the kids so Josh and I could go out for a nice birthday dinner. We enjoyed an evening walk afterward and some ice cream. 

Now its back to reality and the real reason we are here. Tomorrow at 3:30pm Malachi will be admitted to the hospital. We are not sure what time surgery will be on tuesday, but expect it in the morning at some point. Ugh. The surgery is about 8 hours (i think). Tomorrow we are going to relax and mentally prepare for this. My sweet boy, my Malachi, my amazing gift will soon be undergoing MAJOR brain surgery and I/we are experiencing every emotion possible. TO say that I am a complete mess is an understatement. 

Day 2-

We started off the day by going to the Hay market. It was a fish, fruit and veggie market with hundreds of stands just like this one. It was so neat and something I wish we had close to us. We got 10 plums for a buck and 2 pints of raspberries for 2 bucks. So fresh and so delish.

Right next to the Hay Market was Faneuil Hall Market. The above picture is a Holocaust memorial. There were 6 huge glass towers representing each of the 6 gas chambers. The towers are constructed with glass panels. 

There are millions of 7 digit numbers representing each person that was killed. It was a somber experience.

 After the markets we headed to the Science Museum. We took Malachi and Eli into a children's area. They had a blast playing. 

Daddy had fun too!!

A little later in the afternoon we took a tour on a duck. A duck is a WWII amphibious vehicle. We got to see many historic sights. The above picture is the original building where the Declaration of Independence was read, and is still read from the exact balcony, on the 4th of July. 

This is a picture of the steeple that held the lanterns of the famous Paul Revere story "one if by land 2 if by sea."

A shot of the Boston skyline.

Eli and me enjoying a nice boat ride. We took lots of pictures today but Eli managed to elude most of them. He is not a fan of his picture being taken, he takes after his mother. 

And one final picture of Mr. Smiles. 

The plan for tomorrow is to head to Cape Cod and enjoy some time at the beach. 

Hello Boston!

We are here...finally!! Our journey to this eastern state has been amazingly short yet long at the same time. We landed today around 9:20am. Josh and I got all of 2 hours of sleep...I have been a walking zombie! The flight went well and both boys slept most of the flight....thank you God!! We got our rental van and headed to the famed Children's Hospital of Boston. Our first impression? It's all that and so much more! It's HUGE, busy and such a happy place. Malachi was supposed to have a pre-op appointment today but upon arrival we were told that it was canceled. Since they decided to admit Malachi the night before surgery they will do the pre-op exam then.  So we left the hospital and headed to our home away from home for 2 weeks. Our room is great. We have a front living room and then a separate bedroom.  There is also a dorm room size fridge and a microwave...amazing. We didn't do to much today, we are all worn out from the travel. Tomorrow we are planning on doing some sight seeing and spending time as a family. I am so looking forward to it. I promise I will have pictures to post tomorrow!!

Hello Boston...thank you for welcoming us with lots of sun.

On a side note. Please, please, PLEASE pray for Joshes grandma (Nana) as she is being transfered to a bigger hospital to have open heart surgery.

Bags are packed

Ah...it's 7:30 ish here in Illinois. I am sitting on the couch, Malachi is crying in his crib, Eli is playing in his jumper and Josh is updating the Ipods. Our bags are packed (well most of the way) and we are ready to go. It's real, this is happening and at this time tomorrow night we will be resting in Boston. I still can't believe it.

Reality will finally hit me tomorrow morning when my alarm goes off at 2:30 am. Ugh. I am praying that they boys will sleep on the flight (which leaves at 6:25 am), that their ears will not pop and that it will be and enjoyable flight for all. Wishful thinking? Most likely there will be screaming, crying, spitting up, hitting, temper tantrums and melt downs but it is all part of the journey right? RIGHT! So I will remain hopeful and optimistic.

As for me? Well I am stressed BUT I will get through it. I am praying I remembered everything, praying that we don't miss our flight, that we dont get delayed, that we dont miss out appt. in Boston at 1 tomorrow, that we can check into the hotel early and that I don't lose my mind in all of this stress. Good news is, I dont have time to worry about the reason we are there...brain surgery. I still don't believe it.

I will post tomorrow about our travels. Think of me and pray for my sanity.

days

4 days from now we will be getting on a plan headed to Boston.
4 days from now Malachi will have his first pre-op appointment.
7 days from now Malachi will be admitted to Boston Children's Hospital
8 days from now Malachi will be in Surgery.

This is all so surreal. My family isn't going through this, my child isn't going to endure this but the harsh reality is we are and he is. We are trying to have fun family time this week, enjoy the giggles, the smiles and the personality that is Malachi. We have faith that he will come home the same little boy but we also know that a stroke is always looming in the distance. Will this be the time? Will it leave him speechless? Will there be a stroke at all? It's stressful to say the very least. There is so much to worry about and to think about. I've been having difficulty sleeping, my mind keeps racing. Every moment of every day we think about Moyamoya. Unfortunately, surgery isn't an immediate fix. Malachi's blood supply to his brain needs time to grow and branch off. The amount of time this takes is unknown and until his blood supply increases, he can still have strokes. Yes my friends this journey is not over on the 29th, it will continue for weeks, months, days and possibly years. As much as we need your prayer in the upcoming week, we will also be needing your prayers for the long haul.

This will be my last post until Thursday night. We are busy packing, cleaning, doing laundry and shopping for last min necessities.

Iowa

We are home from Iowa. Nana (Joshes grandma) seems to be doing well. Last night when we were up visiting her she was in a wonderful mood. We felt it was a good time for us to go home. Today is her 81st birthday!! HAPPY BIRTHDAY NANA!!

Let me finish by saying Iowa is an interesting place. I saw 8 mullets yesterday, a 40 year old woman wearing a shirt made for a 16 year old, more missing teeth than I care to count and more evil glances than I have ever encountered. To those who have never seen an african american child before...they really do exist, no i didn't cheat on my husband with a black man...obviously he was adopted. Thank goodness I don't live in Iowa.

On an even more exciting note...we leave for Boston in 1 week. Feeling stressed, overwhelmed, anxious and scared all at the same time.

For now Im just thankful to be in Illinois, in my home, with normal people!

MIA

Im going to be MIA for a few days longer. Joshes grandma, Nana, had a heart attack and is in the hospital in Iowa. Josh, the boys and I have been spending most of our time there with family because we know her days are few. We are heading back out there today to stay till the weekend. Please remember our family in your prayers as we wait for God to call her home!!

My bed, my blankets and my pillow

There is very few things I enjoy more and snugging up in a cool bed and drifting to sleep. Typing that makes me want to forget this post and run upstairs to my bed and drift off to dream land!! ah.... Okay back to the point of this blog which has nothing to do with me sleeping, but rather Malachi.

As we have been busy preparing for Malachi's upcoming surgery and our trip to Boston, we have been talking about luggage. We will have a lot of luggage as we will be there for 2 weeks. Not to mention Malachi's newest addition of oxygen and a pulse ox. We will be going and returning with our fair share of baggage. Obviously Malachi will be in the hospital for most of our stay and we want to make his stay there are comfortable as possible, but we also don't want to pay out the booty for extra luggage. So rather than bring a bunch of big, bulky blankets we decided we would bring fun pillow cases. Smart right? I thought so to, so we began the hunt for cute pillow cases. We struck out majorly. I could find nothing at the store other than sponge bob and disney princess. Let me start off by saying I dislike sponge bob and my children will never be allowed to watch it simply for the fact that it annoys the crud out of me. Disney princess? Perhaps is Malachi was a sweet little girl, but even then probably not. Im not a fan of character shirts, pants, swim suits, pajamas or birthday party themes. Don't worry I still like you even if your son had a spider man birthday party last year or if your daughter sports a princess t-shirt. You will just never see my children in them. Unless of course they choose to throw a fit if I don't let them wear their Handy Mandy t-shirt...we have to pick our battles right?  Anways, back to the point...With a lack of cute, non-cartoon, pillow cases out there I began to google "make your own pillow cases." Have I ever sewn? Not really but I have a good friend (LAURA you are the best) who enjoys sewing and is actually very good at it. So off i went to the fabric store. I bought enough fabric to make 4 pillow cases. Last night I got together with Laura and we made the pillow cases. They turned out so cute, so cute that I made my husband go out today and buy me a sewing machine and tonight after the boys were in bed I made my first pillow case. I must say it turned out so cute! I know they will be a source of comfort to Malachi while he is recovering!! And the one I made tonight? The cotton, felt and satin will be a wonderful resting spot for my head each night....

I made the one on the pillow and Laura sewed the other 4 (I only helped pin, iron and cut those) cute right?

PT and OT

Eli has officially started therapy. Right now he has PT and OT each once a week. He LOVES OT....PT? Not so much. I love watching him work so hard and the smile on his face when he succeeds. We have been blessed with AMAZING therapists and we consider them friends. Our schedule is crazy and we see them more than we would like, but we love them. Since Malachi's stroke we have upped his therapy here is our week.

Monday: OT for Malachi, PT for Eli
Tuesday: Open play at Gigi's playhouse ( a Down syndrome awareness center)
Wed.: PT for Malachi, ST for Malachi
Thursday: DT for Malachi, OT for Malachi, OT for Eli
Friday: PT for Malachi

Yikes, I often wonder how I manage it all. In there we need to fit in time to doc. appointments and some fun. Needless to say we are busy, crazy busy but the benefits we see in the boy's outweighs the times of mass chaos. How often do your children get therapy's?

Little Steps

Yes, it's true, Malachi is taking steps. A little over 2 months ago he had his stroke, medical professionals didn't know if he would recover...but he has and has proven to us all that he is unstoppable.  I can't help but cry when I  think about all the things he has overcome. My little Hero!!

Malachi Walking <------click the link to watch his latest skills!

A letter of sorts

I've been racking my brain the past few days for a way to adequately express the way I am feeling. I've postponed this blog post long enough. This may not be the most organized, thought out or eloquent blog I have every written but it will be honest, emotional and a reflection of my heart.

To all those who organized, attended, volunteered or donated,
     There are simply no words to truly express my (and Joshes) thankfulness to you. This past weekend is one that has changed our hearts forever. We were loved on by family, friends, and complete strangers. Their only goal? To help Malachi and us to get to Boston. I want to reassure you that the mission has been accomplished not only for our trip in June but also for our 2 other trips within the next year. Simply amazing. This is a story that the world needs to hear. Not about Malachi, Josh or I but the willingness of others to help and expect nothing in return. THANK YOU, THANK YOU, THANK YOU! That's all I have, a few simple words, to express my heart. You are the true hero's of this story!!!

Our newest addition

Dont get excited, our newest addition is not a baby, toddler or teenager. In fact it's not evening living. So what is it? Fist let me fill you in on the last week.

Malachi was released from the hospital on Monday. We took him back to the ER on Tuesday because he didn't want to eat for us and we were worried he was dehydrated (we are more cautious about this with him as dehydration can contribute to cells becoming sticky. Sticky blood cells and moyamoy don't go well together). The ER doc told us he was fine and sent us home. Wed. morning he was still not acting right and I was getting worried something more serious was going on. In the afternoon I told my husband to take him to the pediatrician.  Like always, she wanted him admitted. So back to the hospital we went. Blood work was done as well as chest x-rays and by bed time that night he was acting more normal. Blood work came back fine and his chest x-ray showed a little wetness in his lung. Nothing to worry about. They started him on breathing treatments every 4 hours. That night he required oxygen while he slept. Didn't think to much of it, little colds hit his weak lungs hard. The next day he was acting more like himself and was out in the hallways flirting with the ladies. Wed. night he needed oxygen while he slept again. This got us all wondering. Thursday the floor doc started looking into a sleep study for Malachi. She knew we had a very big weekend (there were/are 2 benefits for Malachi) and that we needed to get out of there if at all possible. Nothing got set up on thursday so she tried again for friday. Again nothing. So we were discharged with lots of medication (2 antibiotics, a steroid, an inhaler, nebulizer and new reflux meds) and an order to have a sleep study done on monday night. This is where our new addition comes in....we were sent home with a O2 monitor and an oxygen concentrator. Ugh. Malachi is on oxygen while he sleeps. Its a pain in the butt. We were up all night listening to alarms. He doesn't like those prongs in his nose and I cant blame him, but for all of us, PLEASE LEAVE THE BLASTED THING IN YOUR NOSE!!! We are looking forward to getting some answers soon!

Some exciting news....we got our surgical conformation letter in the mail today. It is 100% official. Surgery is going to be in Boston on June 29. We are so looking forward to getting it done and over with.

We had a wonderful day today at the benefit for Malachi. I will write more on it tomorrow!!