Attn. crafty bloggers

This is the logo for Malachi's benefit. It seems things are shaping up great. The friends that are organizing this are still looking for raffle items. Can you help? Are you crafty? Do you make things with your hands that others long for? Please share them with us so we can raise money to get to Boston!!! Feel free to contact me at Strikeoutmoyamoya at gmail dot com.

Looming

It's always there. Just sitting in the corner waiting to rear it's ugly head. Looming, like a thick fog.

I'm having a difficult day. I'm terrified. I am obsessively checking and re-checking. It's there, I know it is. I can't see it and what's even worse than that is, I can do nothing about it.

Moyamoya sucks. Can I give it back?

I wish I could could fix it all. I wish I could return Malachi's hand function so he wouldn't get so frustrated. I wish I could say he would never have another stroke. I wish he didn't have to have MAJOR surgery...twice.

It's not fair. But we were still chosen. He was chosen. I will make the best of this. Most of the time. But today, I just need to be angry. Tomorrow, I will go on fighting.

Moyamoya Sucks.

Do ya?

So do ya like the new blog look?? I absolutely LOVE it! A wonderful bloggy friend, RK from Braska Bear and Just RK Designs volunteered to make a button for Malachi, the her offer turned into re-doing the ENTIRE blog look. I obviously said yes and within a few short days the blog makeover was complete. Go over and check her out!!

Malachi's button is done!! Please feel free to use it on your blogs, actually, that's a must. You MUST use it on your blogs. I think back to Polly, another little girl who lives in our state and also diagnosed with Moyamoya, and her button. The first time I read her blog, it was a post about Moyamoya. When we found out Malachi had a stroke i immediately thought of Polly. I knew his stroke could have been caused by Moyamoya and pushed for testing to be done.  Had I never seen Polly's button or read her story, we could still be left with no answers. I want Malachi's story to get out there so that people can become aware of Moyamoya. SO please, post his button. Who wouldn't want to look at the cute face all the time anyways? Perhaps Im biased!

I NEED YOU!

I need your help, really need your help. Who knows how to make a button? I've been feeling the need to get Malachis story out into the blog world. Moyamoya is so rare and the only reason I knew about it was from Polly. Please contact me if you know hwo to do this or you know someone who can. Thanks.


A WONDERFUL friend of ours has stepped up to do a Benefit event for Malachi. Since our trip to Boston this summer will most likely be 2 weeks and then we will have to make a few more trips out there throughout the first year to follow him recovery. We need help thinking of a catchey line for the fundraiser and for tshirts. Got any ideas? Do you know a graphic designer that could help? Come on blogger friends, we NEED your help!!!

Gotta love it

We have had a wonderful week. The boys are both doing well. Malachi has started therapy back and it is going great, we are currently waiting to hear how much they want to increase. Eli has had some evaluations and we are looking forward to his IFSP in the upcoming weeks. While getting his PT eval. his therapist noticed that he has a mild case of torticollis. Ugh, just add something more to the list. We are working on stretching and positioning, as of now it doesnt seem to be affecting his range of motion and he is able to self correct it if give the opportunity.

Boston continues to look more and more like a probability. Right now I am working on getting all of Malachi's CT, MRI/MRA and angiogram cds and results together to send to them. Dr. Scott will then look them over and decide what the plan of action is from there. Until then we continue to pray that God will protect Malachi's brain. He has done so thus far and He has keep him seizure free which is AMAZING.

Today we are going to visit daddy at work, so I need to get going and prepare the suitcase we need to take with us whenever we leave the house! Have a wonderful weekend!

Sigh...

My last post has created quit the ruckus. I've gotten countless e-mails, phone calls and text messages from people worried that they were the ones I was talking about in my post. Sigh. My intention was not to create controversy or to speak ill of anyone. We are all humans and we all make mistakes, trust me, I know that all to well. I am, by no means, perfect. I also know that my family and friends are not either and at times we are all hurt by those closest to us. It happens, people talk and we move on. I assume that will happen in this situation as well and my goal is that forgiveness happens sooner rather than later. Please understand my thought process on this. I need time. Time to process my feelings and time to "cool down." As I said before, I am not perfect and I tend to fly off the handle quickly. I am working on that and part of me learning to control my reactions is allowing myself time to process. Thus my last post. I expect people to confront me when I have hurt them especially since hurting others is never my intention. I also want to confront others who have hurt me but I want to be sure I do it in a loving manner. So, if you think I was referring to you in my last post, perhaps we need to talk. Lets go out to dinner or get coffee, lets discuss and understand. Perhaps we both need an attitude adjustment. I know that I don't want a long list of excuses but rather a simple apology for hurt feelings. Then we can move on.

Now that thats over. Lets move on...to BOSTON. Yes, Boston is looking more and more like a possibility each day. Malachi will be needing surgery in June and Boston, for those of you that have been living under a rock for the past few weeks, is our number one choice to do the surgery. There are still quit a few road blocks in the way but we believe Boston is where we are supposed to be. We will continue to pray for God's will to be done and that we will accept whatever that is.

Bam

Our life lately have been a whirlwind. Just when we thought things were settling down...BAM...Malachi has his stroke and then a few days later we were told he has Moyamoy and then...BAM...he will be needing major, MAJOR surgery on his delicate brain. The last few weeks have been trying to say the least, a true test of our Faith. We have felt the entire gamut of emotions. Presently, we are at peace, an unexplainable peace that we can only attribute to God and his ability to carry our burdens when they are to much to do it on our own. Malachi is stable and doing well..for now..blood flow in his brain is still restricted and a stroke is always looming right around the corner but he is happy, he is alive and he continues to improve and we are choosing to focus on that. 

I need to be honest here, although I have come to terms with all that is going on with Malachi...I am still hurting. I am angry and struggling to forgive. No, I am not hurting because Malachi is going though this, I am not angry because God chose our family to weather this storm and no I am not struggling to forgive myself for not catching the signs earlier. What we are going through right now is HUGE, Malachi could suffer another stroke at anytime, a stroke that could end his life and there is absolutely nothing I or any medical professional can do about it. Perhaps you don't understand the severity of this disease or the impact it is having on our family. Perhaps you do understand and you just don't care enough to reach out to us. Perhaps your situation is worse than ours which leaves you numb. Perhaps your life is perfect and you thank God for your healthy children but what would you do if you woke up tomorrow and your perfectly healthy child was laying lifeless? Who would you turn to? Would would you call? How would you react? Would your family be there to support you? How about your friends? Your Church? We have been blessed with wonderful families who have been by our side each step of the way. Our close friends have also been amazingly supportive. But if I am being 100% honest, I have been disappointed. People who I have expected to be there, haven't been. People who say "we are praying for you" yet never call to pray over the phone or meet us at the hospital while we wait for 4 hours to be transfered to another hospital. Yes my feelings are hurt, I am angry and I am struggling to forgive. I am praying for the words to say and that I have a gentle heart when I talk with those people. Please pray for me as I seek God in this situation....

Eli

With all that has been going on with Malachi, I've neglected Eli on the blog. He is now 5 months old, weighing just about 9lbs (yes he tiny) and long...really long. In the 90 percentile on a NORMAL growth chart. Finding clothes for him is a pain in the rear. He so skinny so pants that are long enough, don't fit in the waist and shirts that are his size are so short and show off his tummy. 

He is recovering from surgery like a champ! No issues what so ever. And today he surprised me by rolling over!! I know he can't be on his tummy for 5 more weeks...but I was just to excited, I admit, I let him do it a few times so I could capture it on the camera! 

Here are a few photo's from surgery...

This one was taken a few hours after surgery. Overwhelming to say the least.

 

First time eating the day after surgery...He was so hungry!

This was a great moment, full of tears of joy. 

Our wall of support! Most of them from Joshes students!

Just a few of the cards we got! Thank you to all who sent them, it was wonderful to read them all! There were twice as many hanging up when we got discharged!!

The day before we went home. 

I still can't believe his heart surgery is over and that he is only going to get better from here on out! Simply amazing. I am so thankful for all of our nurses and Docs that made this a success story. Thank you for loving our son just as much as we do!! 

Way to rock it Eli, mommy and daddy are so proud of you!!!

Back in the game

We are settling in, getting back into our routine and enjoying our time together. We have spent the last 2 nights eating dinner with our parents, letting them snuggle with our boys and talking about what the future holds for us. I've been in contact with Dr. Scott in Boston and as long as we can figure out all the logistics, we will be going there in June for Malachi's Moyamoya surgery.  We are excited about sharing our little joy, our light and our remarkably resilient son with those in Boston. I'm sure their hearts will be warmed by his smile and grace!

It's hard to believe that 2 weeks ago he had a stroke. A major stroke that would have left any adult paralyzed, unable to see, hear or eat. They would have no expressions, no glimmer in their eye, just a lifeless right side with droopy eyes and drool. Yet here is my son who is crawling again, walking with assistance, pulling to stand and cruising along furniture. He cant eat, drink and talk. He still has his sparkle in his eyes and a smile on his face. This journey is not even close to being over and the risk of another stroke is more of a probability rather than a possibility so we are celebrating each small accomplishment, giving thanks to God each step of the way.

Home again, home again...jiggity jig

HOME...we are... HOME. All four of us, me and my boys. Never have I been so happy to see my overgrown flower beds, messy garage, to small laundry room or the mess that greeted us just inside the front door (we were not finished unpacking from Eli), it's great to be home.

Now that we are home...its back to business. Bed time at 7, therapy and working on walking. Malachi is crawling still which is amazing! I'm sure he will be back on track in no time. We will continue to challenge and push him to be the best he can be. In order to do that, I must rest. Off to be I go...my own big bed...ahhh I cant wait!!

done

The angio went well. They did determine that Moyamoya was the cause of his past stroke's (yes hes had more than one and they were to little to even notice any changed in his behavior.) We have yet to figure out a plan for surgery, but expect that in the coming weeks we will have a more definitive plan.

Today the plan is to send us....HOME!! Malachi is well on his way to recovery!! We are so looking forward to getting home, sleeping in our own bed, being together with our entire family (it's been 19 day's since the boys have seen each other), eating a meal made in our own kitchen and snuggling with my little loves.

I must go and snuggle with my big boy...I cant wait to be home!!

Angiogram

Malachi is in the angio. room right now. They have him intubated and the a-line in right now. They are getting ready to inject the dye right now. We should have results later today.

leave it to the bees

"Aerodynamically, the bumblebee should not be able to fly. But, the bumblebee does not know that so it goes on flying anyway." ~Mary Kay Ash

I don't remember where I first heard this quote but I have used it time and time again. 

Let me fill you all in on the events that lead up to Malachi's stroke and recent diagnosis of moyamoya.

Thursday of last week Malachi spent the entire day at the zoo with his aunt and cousins. Elijah had just come home from the hospital the day before, so it was nice to have some time to get settled back in before Malachi came home. Thursday night Josh went to pick Malachi up. When he got home we changed his diaper, he felt a little warm so we gave him some Motrin and put him to bed (his temp was 101.2). The next morning he woke up super fussy and he still had a fever. So I decided to call his pediatrician and she wanted to see him. When we got to the office he began to throw up and she thought he was dehydrated so she sent us to the hospital to be admitted. We got to the hospital and he started drinking but he was still unbelievably crabby.  They tried to get an IV going with no success. But he was drinking and not getting sick, so they were not to terribly worried that he didnt have an IV. Later that night we were discharged. He was still grumpy and was still having some fevers. We went home and put him to sleep.

The next day when we woke up (this is now sat.) we realized he was not using his right arm. We though perhaps he had broken it or dislocated it while with his cousins. So back to the ER we went. When we got there they did x-rays and didn't see anything so they diagnosed him with Phlebitis. They thought he had some inflammation of a vein because of the IV they tried to get the day before. So we went home. Malachi was still super fussy and needed to be held all the time. He was sleeping a lot too but we thought it was because he had the flu and he was tired and weak. 

Easter Sunday Josh realized that he was not moving his right leg. This is when we knew something was terribly wrong. We took him to the ER again and they noticed definite asymmetry. They rushed him in for a ST scan. When the results came back as a stroke we were all shocked. The Docs decided to send us to another hospital. Off we went 2 hours away. On top of the stroke he also had RSV. 

At Hope they ran a bunch of blood work as they thought the cause of his stroke was due to a clotting disorder. When those test started to come back negative they began to wonder.  They scheduled him for a sedated MRI/MRA.  That one test changed our lives forever. Malachi was diagnosed with Moyamoya. 

I thought I would give you all a little basic information on Moyamoya and what this new diagnosis means to Malachi and our family.

Moyamoya is rare, very rare. Moyamoya is a cerebrovascular disorder caused by blocked arteries at the base of the brain. In japan Moyamoya means puff of smoke which describes the tiny blood vessels the form to compensate for the blockage of the larger ones. There is very little information about the causes of Moyamoya, but they do believe it is a genetic inheritance. Moyamoya is not usually found until the person have a series of strokes. Thus the case in Malachi's situation.

There are several types of revascularization surgery that can restore blood flow to the brain by opening narrowed blood vessels or by bypassing blocked arteries. Children usually respond better to revascularization surgery than adults, but the majority of individuals have no further strokes or related problems after surgeryhttp://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm).

Surgery is our only option.

The plan from here on out is as follows...Malachi will be having an angiogram on monday. This will show the neurosurgeon exactly what is going on with the blood supply to his brain. While he is having the angiogram they are going to be looking to see if they can temporarily place stints to help blood supply until he is ready for surgery. They call that procedure an angioplasty.

After the review the results of the tests today, they will let us know what they feel is the best plan of action. There are a few different types of neurosurgeries they can choose from. The option that they feel will fit Malachi the best is EDAS encephaloduroarteriosynangiosis). This is where they cut muscle out of another area (most likely from the jaw area because it is loaded with tiny vessels) and place it on his brain. The theory is that those little vessels will grow and provide blood to the areas that are not receiving it. This is a major surgery since they are going to be operating on his brain.

The hard thing is we need to let his brain heal from this stroke but there is a chance that he will have another stroke while we wait for his brain to heal. If he has another stroke,we have to wait for his brain to heal before surgery again. Ugh. Time is going to be our biggest hurdle. Once the surgery happens we will not see immediate results. It will take time for the new vessels to supply the brain with blood. It's a very fine line we are walking.

All we can do if pray that God protects his brain while we wait for the right time.

Malachi will beat Moyamoya...

Leave it to the bees to show us that what is impossible with man is possible with God. Malachi continues to prove the doctors wrong. Just about a week after his major stroke and he is already pulling to stand...he just leaves the docs scratching their heads in wonder. God is using Malachi for great things I am sure he will continue to amaze us all!

It's official

Malachi was officially diagnosed with Moyamoya on Tuesday. We were transfered to another hospital to have an angiogram. Unfortunately he has the metonumo virus which is keeping him on oxygen. He also has a nasty cough so neurosurgery and interventionist neurosurgery didn't feel comfortable putting him to sleep. So the new plan is to let him recover from the virus and then go home. We will come back in a few weeks for the angiogram and then wait to see the results from that to make a plan for surgery. This journey is going to be long but we are in it for the long haul.

Party

Josh and I have had a very difficult day. We have cried and cried and cried again. I'll admit, we threw ourselves a pity party, a massive pity party complete with black streamers, black balloons and black party favors. The party lasted most of the day, yes it was a long party.  But now the party is over and we are feeling better and more optimistic. Malachi will be fine. No more tears to be cried and no more parties to be thrown. We are moving forward with hope, faith, love and peace. We are taking the first step on this new journey with all our family and friends cheering us on (yes my loved ones, that means your pity party must be over too). We are going to suck it up and get going. Our path is still unknown and our destination still far, far away but we are equipped with the right "tools" to help us along the way. Each of you are playing an important role, we may ask you to quench our thirst, feed our bellies, rub our feet (mine smell like sweet nectar), repair our walking sticks or cheer us on from the sidelines. At times the path may be rocky at other times smooth. We need you to walk the path with us, providing us a resting place when we get weary and encouragement when we are feeling defeated. You my sweet, sweet friends, are a part of this and whether you like it or not your on this journey with us.

God is good, so so good! Thank you for choosing us!

MoyaMoya...

Malachi had his MRI/MRA last night. It is looking like he is being diagnoised with MoyaMoya disease. For those of you that don't know what it is go Here. When this first started happening a few days ago MoyaMoya was the first thing I though of. So the diagnosis doesnt come as a cpmplete shock to me. We are going to be talking to nuro-surgery today and hope to get some answers. We do know that this is a progressive disease and unless corrected with sergical intervention, Malachi will continue to have strokes. They believe this stroke has been progressvie and they can see where new pathways have been formed around the parts of his brain that had blood loss. The entire report from the MRI is still not in so we should have a better idea of what is going on. But brain surgery is definatly the only option we have. Ugh.

The goos news is that Malachi has started to use his right leg more and more. PT and OT were in evaluating his mobility yesterday. They were pleased. They had Malachi stand for a while and helped him move his arm around. The nurologist came in to take a peek at him and he told us he was optomistic. So are we. We will continue to challange Malachi and push him to do his best. We have never babyed him and we are sure as heck not going to start now.

I don't want to be going through all this and see my baby in so much pain, but I will continue to praise God for all that he has given us. Malachi is alive and I am so thankful for that!!!!

We are also haveing issues with his sodium levels, they are low. And this morning they told me he is not peeing like he should be, so they are worried about that. Our medical team now consists of Cardiology, Hematology, Nurology, Urology and now Nuro-Surgery...oh my!

Malachi did finally get to drink last night, they dont believe his ability to eat has been effected, so that is good. We are hoping to get him up and playing today.

They tried to get a picc line in last night with no luck, he didn't like the sedation. So they are taking him down today to put him alseep so they can get it in.

So here we sit, with a new diagnosis, in a brand new day. Its going to be a good one...I just know it!

I dont want to write this

I really don't want to write this but I must. I am sitting here in the PICU, next to Malachi. He was hospitalized late last night for RSV and a stroke. Yes my big boy has recently suffered a major stroke that is affecting his right arm and leg. Thanks about all we know right now. At some point I will go into how we found out and what led us to this but right now is not the time.

As far as they stroke. They are still not sure what caused it. We anticipate a lot of testing today. He will be going in for a sedated MRI later this morning, followed by a ton of bloodwork and ultrasounds of his legs. They are thinking he may have a clotting disorder or possibly Moyamoya disease.

Josh and I are doing okay. We are obviously terrified and worried about out peewee. Its so hard know that just behind that skull something so serious is going on and there is nothing we can do about it. We have been running through questions, will he walk? Talk? communicate? Its overwhelming to say the least. The one thing we don't want is people's pitty. We need you guys to be strong for us, to encourage us and to support us. Pitty is going to get any of us anywhere, we know that you are sorrry this happened, so are we. Right now we need to focus on  geting through this and being strong for Malachi. He is a tough cookie and we are trying to rest in that. Malachi has proved the docs worng time and time again and has left people scratching their heads. We are confident he will do the same in this situation.

We dont understand why we were chosen for this new journey or why our baby was chosen. But we are trusting that there is a reason, a reason that non of us can comprehend, a mission from God to reflect all the glory back to Him. Time will tell. Until then we wait for any news and cling to hope and our faith in Christ.