Moment by Moment

I almost lost it today. We have been doing so well in this waiting period between appointments and waiting for the next test and surgeon visit. I am truly grateful for God allowing so many distractions to help us get through these days. It hit me this morning on the way to work though. Random thoughts in my head about the day ahead – work to do lists, meetings, to do list at home, work meetings again, “wait what day is it?…Oh my goodness…..It is Thursday – which means tomorrow is…”...My stomach started churning, the lump came into my throat, panic, breathing… Ok so I didn’t almost lose it – I DID lose it. Okay (telling myself) just focus on the music, on the words, on God’s presence. But all of a sudden it felt like the day we found about MJ’s brain malformation all over again. I realized – I want answers but I don’t know if I am ready for them.

Can I be completely candid with all of you? I get a kick out of people and how they try to be encouraging – bless their heart (and I mean that sincerely). I know they are trying to sound positive, or make the situation feel lighter than it does – but you really have to hear it from our side. “Oh they’ll just give him a shunt right – no big deal?” OR “Oh so they can just take a piece of bone out of his skull and that will help?” - and they say in in the most uplifting voice as if “cool well there is your solution simple as that!”. Now don’t get me wrong – We are so incredibly grateful to have those type of people in our lives that can be there to try and uplift us, to encourage us, and to help us count the blessings. We see their hearts in it and we love them for it.

(Being intentional here about being transparent)  - I have to tell you when I talk to people or think about my feelings or write about them I can’t help but wonder – Am I being a total drama queen? Do people think I am being overly dramatic? Because to be honest with you sometimes I even question myself on that. We are told his condition is treatable. We are told most treatments are very successful. But I just can’t get out of my heart the fears I have for my baby.

I just keep thinking about the fact that eventually MJ is going to have to have brain surgery. As routine as it may be – it is still brain surgery. My little 5 year old; the one we fought so hard to have; the one that has had nothing but health problems his whole life. The one we named “Gift of God”.

Then I feel guilty for all of my fears and sadness when I see what another family is going through at church with their son who has bone cancer. I can’t even begin to imagine what they are going through – I know emotionally it must be 10 times worse. And I feel guilty having all of these fears and this sadness when I am supposed to have faith that God will take care of everything.
I just have to tell you when you see me around and you ask if I am okay – in that moment I will probably tell you I am – but as some of you have told me this week you can see in my eyes I am not. I (we) are still scared. I (we) are still sad. We are still stressed. And we are only getting through moment by moment.

And again – I feel like I sound so dramatic – but it is what it is. You can’t change your feelings.

So tomorrow is the day. MRI number two – this time of his spine to check for cysts. God be with us. We need to be strong for MJ right now.



 

Chiari Kid Update

1. MJ’s spine MRI is scheduled at Phoenix Children’s Hospital on Friday 2/1/13
2. MJ’s follow up appointment to get the MRI results from the neurosurgeon on Monday 2/4/13.
3. These appointments will determine what the neurosurgeon’s recommendation of when and how to do MJ’s brain/skull (and possible spine) surgery.

 

We have our moments of peace, and we have our moments of fear. Now more than ever we are chosing to rest in our favorite passage.

 Philippians 4:4-9 (NIV)

4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.


Thank you Lord for your Word.


**Check out our blogs labeled "Chiari Kid" to catch up on or keep up to date on MJ's latest story.

Chiari what?

One week after an MRI visit for MJ. An MRI visit we were expecting to only give answers to help with Autism therapies – An MRI to confirm there were not any undiscovered issues. Only to find out there was an undiscovered issue completely unrelated to any of his current diagnosis. So here we are – in yet another waiting room – with yet another provider – regarding yet another condition to add to MJ’s list:

Chiari Malformation

Thank God for living in a city with some of the most amazing pediatric health care providers in the country.

Dr. Adelson at Barrows Institute at Phoenix Children's basically explained this: MJ's skull is too small for his brain. Chiari Malformation is when the brain runs out of room in the skull and the cerebellum gets squished down into his spinal column and compresses the spine. It is normally found in children ages 5 and up. Matthew's condition seems to be more advanced for a 5 year old then they would expect. He has already completely run out of room in his skull. Normally there is a little space left at this age (even in Chiari patients) and it slowly gets filled up as they grow. MJ has absolutely no space left. They allow up to 5mm of the cerebellum to go into the spinal cavity and still be "acceptable". Mathew's is measuring at 16mm of his cerebellum being squished into the spinal column. It is blocking drainage of the spinal fluid and the spinal fluid gets forced to go places it is not supposed to go like a cavity in the spine (they have confirmed MJ has spinal fluid in that cavity). The next phase of his condition would be for the spine to get cysts from the spinal fluid improperly draining. They need to do an MRI of his spine to know if he has any cysts – which is our next step.

What does this all mean? Even though he is not having any major symptoms now (breathing problems due to the throat closing off, sleep apnea, major headaches, numbness and tingling in extremities) he will get these eventually. Basically even as he gets older and grows MJ's condition will only get worse. With that said – a brain/skull surgery is inevitable. If they confirm he has cysts in his spine they will recommend surgery soon. If he does not have any cysts in his spine they will communicate the pros and cons of waiting vs. doing surgery now and give us the choice.

We did the MRI because MJ was having unusual movements that seemed excessive for typical Autism –not this….. In a strange kind of way we were hoping this would be an answer to his odd movements but it seems that needs further investigating. Dr. Adelson is going to recommend to MJ’s Autism doctor, Dr. Blitz (they both are with Barrows at Phoenix Children’s Hosp.) that MJ needs an EEG to check for possible seizures causing his excessive odd movements. The doctor today confirmed the Chiari diagnosis has nothing to do with and is in no way related to his Autism, or his movements – it was found in ADDITION to his other issues. Yup – another one for his list. Man oh man is this kid going to have an amazing testimony!

So we probably won’t get the spine MRI for a week or two because Phx Children’s is so busy. We need to follow up with his Autism Dr. about the EEG. More “wait and see”. But that is okay. God gave us an amazing peace today – His peace. He is the Faithful One.

We will keep all of you updated. I am sure there will be a time in the coming weeks where we will need many of you by our side. We are so thankful that God has blessed us with such amazing family and friends. Thank you and love you all!

Cry Out

We just received news this week that our 5 y.o. may need brain surgery. Brain Surgery. I knew if I worked from home I would drive myself crazy thinking too much. I made myself drive to work the past two days knowing it was best to stay distracted until his doctor appointment at the end of the week.

To keep my mind from wandering I knew I needed to do something to stay focused on what was important – to stay focused on Him. I always have Christian radio on in the car. For those that don’t know I am a musical person and I love how music has a way of drawing out and portraying emotion in ways that simple words never can. Have you ever listened to songs so intently that you just hung on every word as if your life depended on them? As if they were your next breath because you knew you couldn’t get that breath of life without something to keep you focused? Never in my entire life have lyrics to songs ministered to me the way they have when I have been alone in my car this week during my 2+ hours of commute time each day.

Although it was definitely not the only one that got me through the last few days; this song seemed to come on every time I was in the car. I never thought much of the song honestly. It’s not that it was bad – just not my style and not something that touched me much…until this week. Suddenly I realized what this song was all about. Suddenly I felt the deep pain and desperation that must have been experienced in order to write such an emotional song. Every time I heard it in the car I sang it to the Lord with all of the passion in my heart and laid it all at the cross. Tomorrow’s follow up appointment with the neurosurgeon is terrifying - but I know he hears our cries.

 I just want to thank each and every one of you for your calls, thoughts, prayers and love you have shown us the last couple of days. Thank you for walking this journey alongside us. We need you all.

 

MRI Results

So if you haven’t read (in previous posts) already, our oldest son MJ (5 y.o.) was diagnosed with Autism in September (2012). Since his diagnosis there have been several different evaluations to further pinpoint his individual issues and needs. 

His Autism Dr. at Phoenix Children’s Hospital sent us for an MRI due to some of his unusual movements that we have been concerned about- mostly she wanted to check for possible silent seizures. When I found out they were doing MJ’s MRI, boy was I nervous for him. They (of course) needed to put him under anesthesia so he wouldn’t move – and that had me worried. What mother wants their child to have to be under anesthesia for any reason, right? MJ had his MRI under anesthesia on Friday 1/11/13 and I have to tell you Phoenix Children’s Hospital is nothing short of amazing. He went through it like a champ.

But…….the MRI Results - Not what we expected

Children with Autism often have issues with the frontal lobes of the brain so this is where they were looking. We had the MRI on a Friday. We received a call directly from MJ's Dr. on Monday morning. Yes I said directly from the doctor herself – the first office day after the test….this can’t be good. She was calling to tell us that they found something on the MRI but not what anyone expected. While looking over the total brain - they found his brain/skull did not properly/fully develop in utero and he is being diagnosed with what is called Chiari Malformation. Chi – what? Brain birth defect? Oh Lord help me.

He has structural defect in his cerebellum and brain stem. We don't know much else right now except that it causes balance issues, breathing problems, swallowing problems, sleep apnea, muscle weakness and pain. We have been referred to a neurosurgeon at Barrow's Institute at Phoenix Children's Hospital and we will see him on Thursday morning (1/17/13). Most likely this will result in MJ having some type of brain surgery.

When Dan called me at work after he got the doctor call I went numb. I was gasping for air, my world went spinning, and I was literally shaking like a leaf. It had to be one of the most terrifying phone calls of my life. My baby was going to need brain surgery? Oh dear God please help us!

Scared and sad doesn’t even begin to describe the feelings we are having right now for our little boy. You know in times past we haven’t wanted to “bother” people with things, we have wanted to “handle things privately on our own”. Seems ironic considering our hearts are so heavy to help others, but in times past we didn’t want others to help us. We are rallying the troops on this one. Now more than ever we covet your prayers. Each and every one of you, whether you know him personally or not – the Lord hears it all. Thank you.

Matthew 18:19-20 (NIV)

19 “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20 For where two or three come together in my name, there am I with them.”

Sew what?

I remember growing up my mother would always be working on some type of sewing project, almost always some sort of home décor like curtains or chair covers, etc. I am so grateful she passed the love of sewing down to me starting in junior high.

I have had the pleasure of making countless numbers of curtains, pillows, blankets, and even clothes. I’ve always had to have to stow away my sewing machine in the case in a closet and take it down every time I wanted to use it. Recently my wonderful husband has found a way for me to keep out my sewing machine! Thanks to his open-mindedness   and talent for organization (a common trait we share hehe) I now have a nice sewing corner in our dining room. It has been so wonderful!

I just have to tell you, my husband is so creative! He has a way of seeing the value in things and re-purposing them into wonderful new things – especially when it comes to organization. We were definitely made for each other. J

I was explaining to him that I wish I didn’t have to dig into my sewing basket every time I wanted to change the color of my thread, but of course I wasn’t going to go out and buy a thread rack like they sell in the craft stores. I could think of a million other more important things to spend our money on.

Within two days he came up with this! Something we had in the house, and something that was an extra piece from our kids Christmas gift! Really didn’t cost us a thing – the wooden box was part of toy train packaging! He added some hooks for me to hang it – I painted it (with paint I already had) and added elastic to keep the spools from falling off (already had that too)!

We as a couple have been more inspired in recent years to re-use, re-purpose, and re-design old things simply out of necessity. Even though we have been blessed with more resources this past year we want to continue to do everything we can to be good stewards of what God blesses us with. I mean everything – even the “small” things.
 

I am so thankful for the little things He blesses us with each and every day!