Tucker and Beaker

Just look at this face!

Just can't help but smile!

How old do you have to be to get away with this?

WHOOOSH!

Our rollercoaster ride continues! The boys had bball games last night, Jeff and I and all the boys were there (it can be really hard to make that happen with all our schedules). Matthew has had one dream and that was for his first score to be seen by all of us. He has done really well for a first time player with defense and rebounds but had never scored. Tues. night he was so mad at himself for "walking" and missing a layup.

He grabbed a pass, put it up, and WHOOOSH! And the crowd went wild!!! He was so modest but absolutely thrilled. You would think he broke an Olympic record or made the game winning score (we lost the game, by the way, but we didn't care:)! But for him, it was a hard-earned dream come true, and all of us who know his spirit were so incredibly happy for him! And just one more time that Matthew has inspired us that all things are possible! I remember the infant legs that didn't look or kick normal because they were so weak from lack of circulation. And now I watch them run down the court and am reminded that He is always there, even in a small town middle school basketball game, revealing Himself in a little boy's eyes and in the many tears shed for His grace upon us.

Where we are now

I have lots of praises and requests today! We had our appointment today, it all went smoothly and I wanted to let you know where things stand. Jeff went with us and we had a very informative consultation with the doctor. He was very kind and appeared to have really studied Matt's case and he showed us the MRI images so we could see what was going on. We asked a lot of questions and he patiently answered them. Jeff and I both thought about how hard it would be to be a pediatric specialist dealing with life-threatening conditions in children, with very worried parents. Poor guy, can you imagine putting up with two anxious parents throwing questions at you right and left, who are both doctors:)!

Matthew has an area in his aorta that is too narrow, it is a little longer that we realized until the MRI and may be "kinked" more than is evident on a 2D image. Then the aorta kind of balloons out from the increased pressure (but there is not an aneurysm). The goal is to get the aorta to be the same diameter throughout this area so there is not any pressure gradient. He will have to have a cardiac cath under general anesthesia and with intubation and they will take size and pressure measurements with the catheter and then come out and talk to us about options. The pressure may be lower than it appears and nothing will need to be done (based on results so far, this is not likely). They may be able to dilate the area with a balloon (this is also less likely of a scenario because they probably cannot stretch it big enough without taking risks of rupture, which could prove fatal). They may be able to put a stent in to stretch and hold it open. Likely a stent that would fit at his size today will not sustain him through his full growth, but may have to be revised in a few years. And the other option is that because of coiling of the vessel and/or size of stent needed, that there is too much risk of aortic rupture to go through the catheter site and he would need open heart surgery. They will tell us that at the time of the cath, wake him up, and schedule that at a later time.

The plan is to do this Friday, February 20. It is only a few weeks away but this will allow him to finish his basketball season. It is getting him in better shape and he has lost 5 lbs (a good thing) in the last month and they are encouraged by that. He has worked really hard and it has made him feel more like a "normal kid" so that he has handled this challenge very well psychologically. His coaches watch him like a hawk and never push him, but give him the encouragement and opportunity to participate and it has been so good for him, I will be eternally grateful. This development has been caught early and the doctor said even a couple of months would be fine and he is not even sure he could get him on the schedule much sooner than that. We certainly would move forward as quickly as was felt needed, but this is something that is more to protect him long-term than of an urgent nature (like his initial surgery!)

My sweet boy was a model patient, wanted to go to school as soon as we got back in town, and does not even want to dwell on all this, just wants to do his thing day by day. I am home for a couple of hours before going back to get everyone and we have games tonight. I wanted to update asap.

I am sending praises up for having such a tremendous husband and father for my boys, he takes wonderful care of us in every way, for caring medical providers with the skills to take care of us,
for the progression of medical science to where a little boy like Matt can survive and thrive, for all the support and concerns and prayers that have been offered up for us. And I praise Him, for through Him, all these things are possible.

Love, Laura

Bring It On!

Prayer, that is! Jeff and I will take Matthew to see the interventional cardiologist tomorrow to discuss the procedures that he needs. We have been going along with all our daily activities, living in the moment, but our concerns are always there in our minds. We have been trying very hard not to show any anxiety around the boys so as not to worry them. They are older now and read us so well. I have been hesitant to schedule things or make any commitments for the near future, not knowing what may be facing us. I know tomorrow I will need to ask the right questions and make the best decisions I can for my child. I also know that I will have to keep up a very positive composure as I listen to the doctor tell us all the things that can go wrong, and give informed consent. I already know what he is obligated to tell us, I just don't want to hear those things said out loud. I know those things are rare, but when your child has a defect that occurs in only 1 in 50,000 births, rare becomes a relative term.

Your prayers and support have done so much already. Whenever the terror and the tears have threatened to take over, I have felt the strength and grace I have needed to be lifted up above them and move forward. Please keep it up, we need it more than ever, like my boys would say, BRING IT ON!

Let It Snow!

Yes, you are reading the blog you thought you were reading.

(The little girls are my nieces!)

Yes, you do see SIX children playing in the snow.

(Which means, yes, I really did bundle up six kids into all that STUFF!)

Yes, she is beautiful!

(And yes, I may be a little biased but doesn't she just make the prettiest little snow princess you ever saw, especially in the Pokemon boots she had to borrow:)!

Yes, my oldest is taking the baby girl for a long walk!

(She is his little sweetheart, and he is mine, just don't tell his friends!)

Yes, isn't Jack's hat just too cute?

And finally, yes, there are not many pictures of Matt and Tucker because they needed to hit the slopes!

(No time to pose for Mom right then!)

Precious children, precious moments, precious memories!

(Now mom needs some precious Ibuprofen and some precious sleep!:)

A Little One-on-One

Thank you, Linda!

Isn't this too cute?

And none of them are even mine:)!

Update on Matthew

I received a phone call around 5:00 pm from our pediatric cardiologist about Matthew's results and the recommendations from the conference that they held at 4:00. I hope this makes sense. The MRI showed the same results as the ECHO but they had a hard time deciding if Matthew should have a stent placed or not, it is kind of a borderline result. Apparently what is happening is that he is growing rapidly and the aorta is growing too but the area that was operated on is not since it is really scar tissue so it is narrower that the rest of the artery now and that is creating pressure there and overall high blood pressure. The thing is, he has a lot more growing to do so I think they are trying to decide at what point to intervene. If they put a stent in now, it may need to be dilated in the next few years. But they don't want there to be long term elevated pressure on his heart either. They do feel like that we have caught this early, I thank God for that little nudge He gives us mothers, when we know "something is not right".

So they want Matthew to have a cardiac catheterization, that is the most exact way to evaluate him and during that they can place a stent in the narrow area and decrease the pressure if it is indeed too narrow. He would need to be on aspirin for awhile to keep his blood thinned a little, but would not have to Plavix or Coumadin (that was a relief to us). We go on the 22nd to meet with the interventional cardiologist for a consult and then go from there in terms of the procedure itself.

Please pray for Matthew as he goes through all this at such a tender age. Please pray for Jeff and I as we wage our battle against fear. I am sure that I will have many more prayer requests as we travel down this road, thank you for "holding my hand"!

Love, Laura

Bouncing Baby Boy!

Ok, well, he really isn't a baby anymore, but I thought the title was cute! Tucker saw the Summer Olympics and wanted to try gymnastics so he started classes in the fall and joined the team last month. He had his first meet today and had a great time! He competed in the DoubleMini and Trampoline and got three medals today! I am just pleased to see him enjoying himself and trying something new and working hard at it. He got up in front of a lot of people for the first time, nervous, and gave a solid performance of his current skills, that is quite the accomplishment right there to me. I am also pleased that he has not backed off from something he wants to do after getting a little bit of teasing about being a boy doing a sport where he is a little outnumbered by the young ladies! I think gymnasts, male or female, are amazing athletes!

Who knew all that baby bouncing would turn into such mad skills?!:)

Thank you!

Thank you so much for all of your prayers, support, and concern! It has meant SO much to us and we are very grateful.

We went today for the cardiac MRI. It required an IV and for Matthew to be in the MRI machine for AN HOUR being perfectly still except for holding his breath intermittently. He was AWESOME! He was polite and positive with everyone we came in contact with, never flinched or complained once. I do not know any results at this time (I did my best to try to get them to tell me a little something today, it was worth a shot:) but this is a very complex test to interpret and will actually be done by a cardiologist-radiologist, very specialized and then Matt's case will be reviewed by the Pediatric Cardiology Dept. at a special conference they hold on Mondays to review and make recommendations on children's cases like Matthew's that may require further procedures. I am supposed to receive a call next week after the conference telling me their recommendations.

I am very glad that we have gotten this done and are moving forward in taking care of my boy and that he did so well with it. It was just me and him and we had some special time alone together today and I just love spending time with him. He is so sweet and positive and talked very little about what was going on with him and his condition but wanted to talk about his older brother's great bball shot the other night, or his little brother's gymnastics meet tomorrow he wants to go watch, or all the things in life he is excited about! Never once has he uttered anything like "why me?"! I know he is being lifted up by your prayers as we all are.

Please continue to keep us in your prayers as we wait for results. I know we will find the patience and peace we need right now through His grace.

And by following the example of a certain amazing and inspiring young boy!