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!!