Our weekend was..eventful, to say the least. Malachi, Eli and Josh have had NASTY colds. Didn't think to much of it. I know what to look for and things to be worried about, I didn't see any of it. Well...little did I know something was brewing.
Sunday I woke up and Malachi was still coughing and it had gotten a little worse. I decided to take him to Prompt care. We were told that he was having some asthma type symptoms and to give him breathing treatments. We came home and went about our day. We invited some friends over and had just started making dinner when I decided to take Malachi to the ER. He was sounding worse and I thought he had bronchitis or laryngitis. We got to the ER and were told he has croup. They gave him humid oxygen to see it that would help, it didnt. Then they gave him a steroid and an breathing treatment. Neither worked. My friend (she came with me) suddenly said, it's at 62. I said what is at 62? And she replied "his oxygen saturation." I told her to find the nurse call button. And after 3 or 4 mins no one was in, so I turned on the oxygen and started it myself. UGH. Where the heck was our nurse? Why was no one watching his monitor? Why didn't the alarm go off? I have no answers. A nurse walked by our room and I informed her what had happened. She said "oh".
I LOST it. We had been the 4 hours, had no answers and they were moving like snails. The doctor finally came in and said we were staying the night. Fine with me, I wanted out of their. So we got to our room, talked to the doc. and got settled for the night. Malachi was on blow by humidifyed oxygen over night with breathing treatments every 4 hours. This morning he was doing much better so we got to come home.
Life with a medically frail child the fun never ends!
Monday, May 31, 2010
Saturday, May 29, 2010
Summer do
It's not even June yet and we have had three 90 degree days! With the hot weather and surgery a month away we decided to give Malachi a new do.
Off it went. He is now officially ready for summer. What happened to my little boy? He is getting way to big, way to fast.
Tuesday, May 25, 2010
1 month
Exactly one month from today we will be in Boston, done with Malachi's pre-op appointment and probably eating dinner somewhere. It's so close I can almost taste the yummy sea food. HA! But it's also so close that I can taste the fear, the worry and the tears running down my face. My sweet pea that has already been through so much is going to be getting ready for the biggest event in his life thus far. And I am worried sick about it.
This is the man that I am entrusting Malachi's life with. He is the guru of Moyamoya disease and the most sought after neurosurgeon in the country. He is the expert and the brains behind Pial Synangiosis surgery and in 1 month we will me him, shake his hand and trust him with our life.
So what is this Pial Synangiosis you talk of? I will let Boston's Neurosurgical Foundation explain it to you. (all information was taken from http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml
What is a Pial Synangiosis?
This operation is designed to take advantage of the tendency of the brains of children with moyamoya syndrome to attract new blood vessels from any source that is made available by the surgeon. We make an incision on the scalp over an artery supplying blood only to the skin over the head. We separate this artery from the tissues around it, keeping blood flowing through it. We open up a window of bone beneath the artery, and then use a microscope to carefully open all of the coverings of the brain right down to the brain surface. The artery is then placed directly onto the brain, and the tissues surrounding its walls are sewn to the brain surface with tiny sutures to keep it in contact with the brain. Then the bone window is replaced securely, and the skin incision closed. In some patients, we may also place an extra small hole (a "burr hole") in the skull remote from the first incision, and at this hole we also make tiny openings in all of the coverings of the brain before closing the incision. In about 75% of patients, new blood vessels will also grow into the brain through this small opening, and the short additional operating time required to do this extra procedure seems worthwhile. To operate on one side of the brain takes about 3 to 4 hours; in many patients, we will try to do both sides of the brain on the same day, under the same anesthesia.
Is it dangerous to operate on both sides of the brain at once?
Operating on both sides of the brain during the same anesthesia probably reduces the patient's risk of having a stroke with surgery. Most of the patients with moyamoya syndrome have a very tenuous blood supply to their brain that can be reduced very easily. Anesthesia can alter brain blood flow, and in particular, the starting and ending of the anesthesia are critical times when blood flow to the brain can be dramatically changed. It is our belief that reducing the number of anesthetic inductions is essential for the child with moyamoya. We also monitor the patient's brain waves ("EEG") throughout the procedure using small button electrodes placed over the scalp except in the areas where we are operating. As we are carrying out the surgery, we can tell whether our anesthetic or surgical techniques are affecting the patient's brain function, and alter either to correct a potential problem. If all is going well after the first side is completed, we will immediately operate on the other side to avoid having to administer another anesthetic on a separate occasion.
What is the chance of another stroke during or following the operation?
The surgery has been safe, and has a low complication rate, but approximately 7% of patients will suffer new strokes of varying degrees of severity either at the time of surgery or during the first post-operative month. Most of these patients had been neurologically unstable before surgery, having frequent strokes or numerous transient ischemic attacks ("TIA's") -- brief periods of neurological dysfunction that are often warning signs of an impending stroke - in the months or weeks before the operation. We believe that such patients are at a higher risk for stroke during a surgical procedure than patients who have had no recent events of this type. For this reason, we usually wait for four to six weeks after any stroke before we proceed with surgery. In four patients, I thought that unstable blood pressure or medication problems were the likely causes of the new post-operative strokes. Some patients have had new strokes while waiting for surgery that had to be delayed or postponed for various reasons; because of the way operative complications are reported, these patients are also included in this group. Most of these patients, by the way, have made excellent recoveries.
Why does the surgery work?
The surgery works by inducing the development of new blood vessels from the donor scalp artery in the area of the area of the synangiosis which provides an additional source of blood to the underlying brain. These blood vessels develop not only from the scalp artery, which is the major source of new blood, but also from blood vessels which sprout from the coverings of the brain around the skull opening. That is why even making a small skull opening (the "burr hole" mentioned above) can also help these patients. We are not sure what makes these new blood vessels sprout and grow, and this response is usually not seen in patients having brain surgery for other reasons. Our research work has demonstrated that in the fluid surrounding the brain (CSF) of patients with moyamoya syndrome are growth factors which seem to induce the development of the new blood vessels. Our research work in this area is ongoing, and we have recently reported on the results of some of this work involving growth factors and other substances in the cerebrospinal fluid that seem to be related to a chronic inflammation of some type in these patients. We hope that eventually it might be possible to enhance the effect of surgery by treating patients before or during surgery with some of these substances.
This is the man that I am entrusting Malachi's life with. He is the guru of Moyamoya disease and the most sought after neurosurgeon in the country. He is the expert and the brains behind Pial Synangiosis surgery and in 1 month we will me him, shake his hand and trust him with our life.
So what is this Pial Synangiosis you talk of? I will let Boston's Neurosurgical Foundation explain it to you. (all information was taken from http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml
What is a Pial Synangiosis?
This operation is designed to take advantage of the tendency of the brains of children with moyamoya syndrome to attract new blood vessels from any source that is made available by the surgeon. We make an incision on the scalp over an artery supplying blood only to the skin over the head. We separate this artery from the tissues around it, keeping blood flowing through it. We open up a window of bone beneath the artery, and then use a microscope to carefully open all of the coverings of the brain right down to the brain surface. The artery is then placed directly onto the brain, and the tissues surrounding its walls are sewn to the brain surface with tiny sutures to keep it in contact with the brain. Then the bone window is replaced securely, and the skin incision closed. In some patients, we may also place an extra small hole (a "burr hole") in the skull remote from the first incision, and at this hole we also make tiny openings in all of the coverings of the brain before closing the incision. In about 75% of patients, new blood vessels will also grow into the brain through this small opening, and the short additional operating time required to do this extra procedure seems worthwhile. To operate on one side of the brain takes about 3 to 4 hours; in many patients, we will try to do both sides of the brain on the same day, under the same anesthesia.
Is it dangerous to operate on both sides of the brain at once?
Operating on both sides of the brain during the same anesthesia probably reduces the patient's risk of having a stroke with surgery. Most of the patients with moyamoya syndrome have a very tenuous blood supply to their brain that can be reduced very easily. Anesthesia can alter brain blood flow, and in particular, the starting and ending of the anesthesia are critical times when blood flow to the brain can be dramatically changed. It is our belief that reducing the number of anesthetic inductions is essential for the child with moyamoya. We also monitor the patient's brain waves ("EEG") throughout the procedure using small button electrodes placed over the scalp except in the areas where we are operating. As we are carrying out the surgery, we can tell whether our anesthetic or surgical techniques are affecting the patient's brain function, and alter either to correct a potential problem. If all is going well after the first side is completed, we will immediately operate on the other side to avoid having to administer another anesthetic on a separate occasion.
What is the chance of another stroke during or following the operation?
The surgery has been safe, and has a low complication rate, but approximately 7% of patients will suffer new strokes of varying degrees of severity either at the time of surgery or during the first post-operative month. Most of these patients had been neurologically unstable before surgery, having frequent strokes or numerous transient ischemic attacks ("TIA's") -- brief periods of neurological dysfunction that are often warning signs of an impending stroke - in the months or weeks before the operation. We believe that such patients are at a higher risk for stroke during a surgical procedure than patients who have had no recent events of this type. For this reason, we usually wait for four to six weeks after any stroke before we proceed with surgery. In four patients, I thought that unstable blood pressure or medication problems were the likely causes of the new post-operative strokes. Some patients have had new strokes while waiting for surgery that had to be delayed or postponed for various reasons; because of the way operative complications are reported, these patients are also included in this group. Most of these patients, by the way, have made excellent recoveries.
Why does the surgery work?
The surgery works by inducing the development of new blood vessels from the donor scalp artery in the area of the area of the synangiosis which provides an additional source of blood to the underlying brain. These blood vessels develop not only from the scalp artery, which is the major source of new blood, but also from blood vessels which sprout from the coverings of the brain around the skull opening. That is why even making a small skull opening (the "burr hole" mentioned above) can also help these patients. We are not sure what makes these new blood vessels sprout and grow, and this response is usually not seen in patients having brain surgery for other reasons. Our research work has demonstrated that in the fluid surrounding the brain (CSF) of patients with moyamoya syndrome are growth factors which seem to induce the development of the new blood vessels. Our research work in this area is ongoing, and we have recently reported on the results of some of this work involving growth factors and other substances in the cerebrospinal fluid that seem to be related to a chronic inflammation of some type in these patients. We hope that eventually it might be possible to enhance the effect of surgery by treating patients before or during surgery with some of these substances.
Sunday, May 23, 2010
A Cure for the winter time blues
Today we hit 90 degrees...in May...just saying it brings a smile to my face. In joyful thankfulness we decided to skip church (yes I know, please save your judgment for a later time) and spend the afternoon on the boat!!! The sun beating down on us and the wind in our hair, it was an wonderful afternoon.
A cure for the wintertime blues for sure!!
A cure for the wintertime blues for sure!!
Thursday, May 20, 2010
Oh Elijah
The littlest love in my life, sweet Eli, has what I like to call an oral obsession. If his thumb isn't in his mouth, his fingers are. If his fingers are not in his mouth, his fist is. If his fist isn't he can be found violently sucking on his forearm. An oral obsession could actually be an understatement. He enjoy's any object that can be chewed on, sucked on and slobbered on. It makes for a wet situation and sometime very sticky, especially if he has just downed a big bottle of sweet nectar. I can often be found with Eli drool on my shirt, as sucking on my shirt and collar bone are some of his most favorite spots. When getting him ready for bed last night I noticed something that most teenage girl try to hide. Rather than hiding it, Eli displayed it with pride. He wanted to show the world that when it come's to sucking, there is none better. Eli had, not 1, but 2 hickey's on his arm. I must nip this in the bud before people start talking, we don't want him to be know around town as "the kid who gives himself hickey's" as this is not an appealing name for sweet little boys. But deny him the joy he finds in it? How could I? I know, I know. It's soon going to be hotter than a Russian steam bath outside, but until them his sweet arms will be covered with a long sleeve shirt.
Tuesday, May 18, 2010
Adoption
Adoption is a BEAUTIFUL thing. Both my boys are adopted, but from 2 very different situations.
I have never said a word to Malachi's birth mom. She has never been around, never e-mailed and probably has no clue where her son is, or how he is doing. The last time she saw him was right after she gave birth and then she ran away. Some times I think we are all better off that she is not around. Then there are times when I am sad because I know absolutely nothing about Malachi's birth family. I don't know who he gets his dark brown eyes from or his stubborn personality. I have questions about his heritage and his blood line. There are medical questions I would like to ask his mom, but I can't. I want to show her that he is a fighter and that he has overcome so much. I want her to be proud of him and share his picture with her friends. But those things are never going to happen.
Then there is Eli. His birth parents loved him so much and they knew he would be better off with another family. I feel honored that they chose us. I am so thankful to them for the gift they have given us. I don't think they will ever truly understand this. Although we have only met them once, we are family, bonded together forever. They are not ready to have a close relationship with us as it is still to painful for them but I e-mail update every once in a while and they reply. I hope and pray that one day they will celebrate his birthday with us and that he can wrap his arms around them. Tonight I have a conversation with his Birth mom on the internet. I was able to ask her where he gets his long eyelashes from (she said they come from her) and she was able to ask what his eye color is. We talked about his heart and development. It was a wonderful short conversation.
Josh and I would love to adopt again....in a few years, haha.
I have never said a word to Malachi's birth mom. She has never been around, never e-mailed and probably has no clue where her son is, or how he is doing. The last time she saw him was right after she gave birth and then she ran away. Some times I think we are all better off that she is not around. Then there are times when I am sad because I know absolutely nothing about Malachi's birth family. I don't know who he gets his dark brown eyes from or his stubborn personality. I have questions about his heritage and his blood line. There are medical questions I would like to ask his mom, but I can't. I want to show her that he is a fighter and that he has overcome so much. I want her to be proud of him and share his picture with her friends. But those things are never going to happen.
Then there is Eli. His birth parents loved him so much and they knew he would be better off with another family. I feel honored that they chose us. I am so thankful to them for the gift they have given us. I don't think they will ever truly understand this. Although we have only met them once, we are family, bonded together forever. They are not ready to have a close relationship with us as it is still to painful for them but I e-mail update every once in a while and they reply. I hope and pray that one day they will celebrate his birthday with us and that he can wrap his arms around them. Tonight I have a conversation with his Birth mom on the internet. I was able to ask her where he gets his long eyelashes from (she said they come from her) and she was able to ask what his eye color is. We talked about his heart and development. It was a wonderful short conversation.
Josh and I would love to adopt again....in a few years, haha.
Sunday, May 16, 2010
Why oh Why?
I spent majority of the day Friday waiting for a phone call from Boston. After the confusion and mess I dealt with a few days prior, I was fairly confident that we wouldn't actually be hearing from them. I let those doubts spill over into other areas of concern. I started to doubt the ability of our case worker, I doubted that the insurance was actually figure out, I doubted the trip to Boston, but most importantly, I doubted God. Yes I have done this before...sigh. This week I learned a VERY important lesson...God will provide when man fails. And provide He did, I got an e-mail late in the day Friday that Malachi was officially scheduled for surgery on June 29. He is in the computer, insurance is worker out and he WILL be in surgery that day. God has provided for us and for Malachi every step of the way. Shall we re-cap?
God protected Malachi while in his mothers womb, although she was addicted to cocaine, Malachi suffered no withdraw after birth. Praise God. Although Malachi was born 2 months early and nearly died at birth, God gave him the strength to fight. God protected Malachi's heart, and although it was not functioning properly, He provided Malachi with skilled doctors to figure out the right doses of medication to keep his heart beating. After Malachi's recent stroke, we talked to his neurologist. He informed us that Malachi should, by all medical understanding, be paralyzed, not speaking, eating or breathing on his own but hes doing it all. God has always provided for Malachi, why should we suspect He wouldn't do it this time? He will.
The strength that Josh and I have had through this entire ordeal can ONLY be attributed to God. There is no way we could have kept it together with out Him being at the center of our marriage. There is not a single thing we have done to deserve God's unwaivering love but we get it every day. I am thankful, even in the midst of this storm. You may not understand it, you may question our actions, my answer to you is Seek God.
We will continue to praise God each step of the way, during each triumph and each hardship. Josh and I want to continue to point to God this entire journey and beyond.
I am thankful for it all...
God protected Malachi while in his mothers womb, although she was addicted to cocaine, Malachi suffered no withdraw after birth. Praise God. Although Malachi was born 2 months early and nearly died at birth, God gave him the strength to fight. God protected Malachi's heart, and although it was not functioning properly, He provided Malachi with skilled doctors to figure out the right doses of medication to keep his heart beating. After Malachi's recent stroke, we talked to his neurologist. He informed us that Malachi should, by all medical understanding, be paralyzed, not speaking, eating or breathing on his own but hes doing it all. God has always provided for Malachi, why should we suspect He wouldn't do it this time? He will.
The strength that Josh and I have had through this entire ordeal can ONLY be attributed to God. There is no way we could have kept it together with out Him being at the center of our marriage. There is not a single thing we have done to deserve God's unwaivering love but we get it every day. I am thankful, even in the midst of this storm. You may not understand it, you may question our actions, my answer to you is Seek God.
We will continue to praise God each step of the way, during each triumph and each hardship. Josh and I want to continue to point to God this entire journey and beyond.
I am thankful for it all...
Thursday, May 13, 2010
Sleeping beauties...
Sweet little hands...soft little cheeks...the image of a sleeping baby warms my soul!!
On a side note, Elijah had another follow up with the cardiologist today. He is now 11lbs 10oz (another pound gained in 2 weeks) and off ALL of his heart medications. Can I get a woot woot??
As far as the Boston mess, I should know more tomorrow! I will keep you all updated!!
I want to get off
I feel like I am on a roller coaster. One second all seems to be going perfectly, the next, I reaching the top and about to fall face first over the edge.
There has been some confusion with Boston. This morning I was told we were not going to be able to go. This afternoon I was told, we can, but they cant guarantee the date. Tomorrow? Who knows what I will hear. I do know that I refuse to take no for an answer. I will fight for Malachi till the day I day. He deserves Boston, he deserves the best of the best, and anything else, just simply, is not an option.
I am not on this ride to make friends. I could give a hoot if you like me. But, I am Malachi's only advocate in this life, the only one (aside from my husband) who will fight for him. And fight I will, because he is worth it.
I want to get off this roller coaster...and it better be in Boston!
Wednesday, May 12, 2010
Boston
June 29th. Malachi will be having his brain surgery on June 29. Yikes. It's really happening, it no longer seems surreal.
Now what?
We pray and we never cease praying. I'm terrified, worried, confused, stressed, excited and full of anticipation. This surgery is life or death for Malachi. If it is successful? He should lead a life stroke free. If it is not successful? He will continue to have strokes that will eventually end his life. It's to much to think about. Why Malachi? It's not fair. Why us?
Silly me, I know the answer. God chose us to teach us and to mold us to be more like Him. We are learning and growing in the midst of our pain. We know that we are not in control and there is absolutely nothing we can do...but pray. And pray we will, and pray you will. Together we will give God all the glory and praise Him for providing time and time again.
Boston...here we come, ready or not.
Monday, May 10, 2010
What are you looking at?
Tonight I really felt it. The looks, the obvious stares in our direction, the wonder and the pity. I wanted to yell at them all, really give them something to stare at but I couldn't. I went about my normal business like I didn't notice them. I played peek-a-boo with Malachi and rubbed Eli's sweet head. I had a great conversation with my husband while we ate our dinner. Yet they couldn't keep their eyes off of us. I wondered if my hair was messed up or if I had something on my pants but I knew better. It would have been so easy to turn around and walk out, yet we chose to stay.
What are you looking at? Yes, I agree, my boys are adorable, but seriously people.
Oh wait, I know. Down syndrome. When we walk into a room all YOU notice is Down syndrome. Poor, poor people. What a sheltered life you lead.
Yes there are people with Down syndrome that live in your community, go to school with your kids, eat at your favorite restaurant and work at the grocery store. Do you feel sorry for them or their parents? Do you keep your children from interacting with them? Or do you stare, like you have never seen a person with almond shaped eyes and a line across their hand?
Perhaps, rather than stare, you should say hi. Comment on how cute they are or how well the play baseball. Maybe you should listen to their story, what they have had to overcome. Maybe then you wont like like a ghost when you see a person with Down syndrome walk into your location.
Maybe, just maybe you will allow yourself to fall in love with their innocence, humor and unwaivering love. Maybe then you wont stare out of ignorance but rather out of acceptance.
What are you looking at? Yes, I agree, my boys are adorable, but seriously people.
Oh wait, I know. Down syndrome. When we walk into a room all YOU notice is Down syndrome. Poor, poor people. What a sheltered life you lead.
Yes there are people with Down syndrome that live in your community, go to school with your kids, eat at your favorite restaurant and work at the grocery store. Do you feel sorry for them or their parents? Do you keep your children from interacting with them? Or do you stare, like you have never seen a person with almond shaped eyes and a line across their hand?
Perhaps, rather than stare, you should say hi. Comment on how cute they are or how well the play baseball. Maybe you should listen to their story, what they have had to overcome. Maybe then you wont like like a ghost when you see a person with Down syndrome walk into your location.
Maybe, just maybe you will allow yourself to fall in love with their innocence, humor and unwaivering love. Maybe then you wont stare out of ignorance but rather out of acceptance.
Sunday, May 9, 2010
Nothing sweeter
There is no sweeter mothers day gift than the giggle, smiles, hugs and kisses from my children. Im blessed because I got those things, time 2 this year. I also got to spend the entire day with my littlest loves.
We had a great time with my mom and dad at breakfast. Later in the day Joshes entire family came over for a late lunch. We love our families and are so thankful we get to see them often.
And the sweetest news of all....Malachi took 3 steps all on his own!! There is nothing sweeter than seeing you child accomplish something that they have worked so hard on. I have tears in my eyes....Only 1 month after his stroke and my littlest fighter continues to amaze us all.
Malachi and Eli thank you for making me the proudest mom ever!!!!! There truly is nothing sweeter...
Thursday, May 6, 2010
On it's way
CT scan, MRI/MRA and a cerebral angiogram, along with write ups of the results, are in the mail and on their way to Dr. Scott. We have been praying and praying that issues of Malachi's insurance would cover treatment at the Children's Hospital of Boston, while it looks like we will be able to go, we are still not 100% sure. We are hoping to hear more tomorrow.
Im off for a night of relaxing with my hubby!!
Im off for a night of relaxing with my hubby!!
Wednesday, May 5, 2010
6 months.
I can't believe Elijah turned 6 months old yesterday! He is weighing 10lbs 8oz and is 27 1/2 inches long (this makes him only 4-5 inches shorter than his almost 2 year old brother...ha). He is still a skinny peanut, not even on the down syndrome growth chart. However, for hight, he is in the 75 percentile. Josh keeps saying he wasn't to dress the boy up like Mario and Luigi for halloween. Eli is smiling all the time and loves when you tell him he is handsome. He has recently learned how to blow raspberries, Malachi sure gets a kick out of that. Eli is rolling over to the right, but not the left. He enjoying sitting in his bumbo chair and looking at the fan. He is drinking 5oz. of 26 calorie an ounce of formula and eating 1-3 jars of stage one baby food a day. Carrots are his favorite. He continues to hate bath time. He is wearing 0-3 month clothings with most being to big in the waist and to short in the length. He is a joy and so loved by his family. We continue to be so thankful for him.
Sunday, May 2, 2010
How?
How
Can
people
not
see
the
beauty
in these faces?
God made them just like He made you and I. How can we choose whose lives are more valuable or more worthy? God never makes mistakes. These children are perfect just they way they are. Whose fault is it if you choose not to see their beauty?
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