How it's going...

So update should happen right?


First Lucy… She’s doing better. Had meningitis I think. Well it kicked her butt. I’m still not 100% sure if her cancer is back or not. I don’t ‘think’ so. But I did find out she was almost brain dead. I think the meningitis gave her a false cancer reading. I’m relieved she’s doing better but she still has a long way to go. She’s in rehab learning to do everything again, and gaining strength. Lucy has an older sister Ella, who is very close to her sister and then a little brother Jack who is too young to understand but misses his Mommy. Kate is Mom, she spends 99% of her time with Lucy. She inspires me, I have no idea how she stays so strong.

Then Owen… the link to their journal is on here somewhere. I love Owen. He’s tugging at me too because he’s so stinking cute. He’s looking toward a heart transplant. This one is heavy on my heart because he’s a heart baby like David. Owen is an awesome kid though and the bond he has with his older sister is AMAZING. I mean just WOW. Owen’s mom inspires me too. All the stuff Owen needs to survive, he’s on oxygen 24/7. She stays strong.

Both families are so far away. Lucy is in Tennessee around St. Jude I think. Owen is in Arizona I think. If I had my choice to meet anyone it would be Owen. I check my Journal’s every day for updates on these two families.

Back on Michigan ground though…

David is doing AWESOME. There is still a 1mm leak, it will be monitored with echo’s every three months. In the meantime let him be a normal boy so that’s what we are doing. We also found out that they are moving him to first grade! On his ADD meds when they tested at the end of the school year he tested above average in math and reading. One of them he was only one point below Matthew, and two below in the other. So WOW!!! Where has he been hiding that? They left the final decision up to us and we decided to go ahead and let him go to first and see what happens.

With summer here we’ve done one camping trip without David. Since Paul and I spent so much time already this year with David because of this two surgeries my Mom suggested we leave David with her and only take Matthew camping so he could have some alone time with us. Matthew made a comment to me that hurt, I had just taken the last serri strips off David’s chest and Matthew says “mommy do you still love me now that David’s heart is fixed?”. Why would he think that? So that sealed the deal on a Matthew only camping trip. I think he’s feeling much better now.

We have another camping trip the weekend after July 4th. My parents and David are going with is on this one. I’m excited sorta… I wish we had a camper instead of a tent but when hauling the boat it’s kinda hard to haul a camper too.

Surgery is over

David had his surgery May 31st, it went well.  They patches the hole/aneurysm in his heart but there was still a 1mm leak.  He spent two nights in the ICU, one in the bay and the other in private room.  His tummy had a hard time waking up from the anesthesia so he had to have an NG tube to drain the acids off his stomach.  We moved up to the floor (a regular room) on Saturday.  On Monday we were told we were going to go home after the chest x-ray and echo.  This echo was what was really going to tell us if we could go home or not.  If the leak was bigger then he would be going back into surgery.  We were hoping for it to be gone but it was still there but it  hadn't changed so we were free to go!

Last night David had a rough night.  He woke up coughing because same as last time he is having a hard time coughing up the gunk in his lungs.  But he woke up FREAKING OUT.  I think he was having a hard time breathing was afraid to cough hard because it hurt.  But all of a sudden his arms and legs hurt, like tingly.  I panicked thinking he was having a stroke and called his cardiologist here.  By the time she called back which wasn't that long he had calmed down.  I think he just had a major panic attack.  So he slept with me last night.

Today he seems to be feeling much better.  The boys were with my parents and my Mom stayed on top of the Tylenol for his pain.  I just HATE seeing my baby like this.

But on a darker side.

Some of my friends on facebook I had seen comment on someone else about their daughter Nora being at Mott with heart issues.  I investigated her and found out that Nora was born back in July and has been at Mott for all but nine days of her life battling heart defects.  I had remembered seeing the name Nora when we were there in January.  Nora received a heart transplant two or three weeks go.  Things looked good at first but then she had to go back on ecmo (life support) and just kept going downhill.  Why we were down there they though she was rejecting her heart.  Fount out she wasn't but had very little heart function.  They took Nora off life support and let her go to heaven today.

Then there is Lucy... the link to the blog about her is on the right.  She's about the same age as the boys.  A little older I think.  She's been fighting brain cancer.  Was doing really well, then she spiked a fever here a day or so ago.  Then was moved to ICU they thought meningitis.  Then her Mom posted this morning that Lucy's cancer is back and there isn't anything they can do.  Lucy will be making her way to heaven soon.

Nora's mom had someone tell her "Don't pray for God to heal her, pray for God to help you through whatever he has planned".

Katie just posted that comment yesterday and it's all I can think about.  Everyday I pray for God to heal David's heart, heal it so he doesn't have to go through this crap anymore.  But now I see that God has a plan for my baby and I pray he helps us through whatever his plan is.

Not Again

I cannot believe this is happening to us, to David. It will be four months since his surgery on Thursday and we are already headed for another one. Yesterday he went for a routine echo to check the work that had been done during surgery. That looked GREAT! But now there is another problem, one that was not there four months ago when they did his exit echo. This almost sent us to Mott via ambulance yesterday.


Dr. T has been working with Dr. Goble for the last year and she wanted him to do David’s echo before he left. He’s the one that gave us the bad new seven months ago that David needed another surgery, though we knew that one was coming. He was again the one to give us the bad news though this one was NOT expected at all. Just below the aortic valve there is a hold, causing an area to balloon out. Dr. T’s words were “That’s NOT supposed to be there”. It was not there four months ago and it’s already at a sage 5. Not totally sure what that means just that it’s not good.

Dr. T was so worried about the findings that he sent the echo down to Ann Arbor and had one of Dr. Bove’s head cardiologist look at it there. He agreed with Dr. T’s findings, but because David is healthy and not showing any symptoms that there was no need to send us down right now. They would have Dr. Bove look at it when he got out of surgery.

The call from Dr. T came in last night about 6:20pm. Dr. Bove agreed with the echo results and his secretary would be calling me with a date. This surgery will be within the next 2-3 weeks. I am not ready for this, this was not in our plans for this summer. This is not supposed to be happening. Why must we go through this again, why must David suffer through this again? It’s not fair.

I know there are kids out there worse off than David, kids needing heart transplants, on oxygen 24/7. Kids die from heart defects every day. We are lucky to have David, as healthy and happy as he is. Not everyone is so lucky. But I wish my boy could be normal. Normal like this brother. I wish he didn’t have all these difficulties and challenges to face.

I know that this too will just be a minor bump in the road once it’s done. But my anxiety has hold of me pretty good right now and I am stressing.

What's Going On...

I guess it’s about time I update. It’s been a month. Last time I posted David has lost his two bottom teeth. He has since been to the dentist for a cleaning, they did and x-ray. She said she doesn’t think they were quite ready to come out yet so he must have hit his mouth but they were almost ready to come out. The adult teeth are through the bone and just under the gum line. Since the appointment one has started to come through his gums.

We’ve confirmed that David will be repeating kindergarten. He’s just not ready for first grade yet. Basically, I know I’ve said this before but, the pre-school he was in last year SUCKED and didn’t teach him anything he needed to know to go to Kindergarten. We knew he wasn’t ready for kindergarten but I was NOT going to leave him in that pre-school another year. He basically learned in Kindergarten what he should have learned last year in pre-school. I feel bad for David. I am however, very happy to report that Matthew will be heading to first grade! He is totally ready, above some of his peers in most areas. Even though he is basically the youngest kid in his class (he won’t’ be six until August, most kids have already turned six) we are still going to let him go on. Next year he will be in an all boy’s class, we will see how he does next year. If we feel at the end of 1st grade he needs some more time to socially grow up, we’ll hold him back then. I really don’t like the idea of holding kids back after 1st grade.

We’ve also started David on some ADD medication. Adderoll, to be exact. The lowest dose is 5mg. She really didn’t want to start him on meds because school is almost over, we know he’s going to repeat kindergarten, and he’s really still to ‘young’ and too small for the meds. We decided to start the meds giving him a half dose, (we take the tablet and sprinkle half the stuff inside), and if after a week we (and the teacher) doesn’t see any improvement then we will give the full 5mg dosage. We go back to the doctor in a month to see how it worked. We may not give it to him full time during the summer and just feet the hell out of the kid so he’ll put on some weight (the kid does eat like a pig, have no idea where he’s putting it), then get back on the meds full time when school starts in August. So basically we are test driving this meds. We are limited on what we can give him because he can’t swallow pills, and this one we can split and dump the stuff out, and put it on applesauce or something. So we’ll see, today is his first day at school with the drug in his system, we gave it to him Saturday and Sunday. I noticed he was calmer Saturday, but Grandma Anne didn’t notice much difference in him when he was with her yesterday.

We took Paul’s boat out for the first time in the 2012 fishing season. Ran good, it seems to run a little faster too. I fished for oh, maybe 10min before I was bored. We left the boys with his parents, and it was nice and quiet, so I read. Paul did catch a 22in pike. He was so excited. Then we saw an Eagle! The fish made Paul’s day, the Eagle made my day. Now we are just waiting for the camping season to start.

Never a Dull Moment

Exciting news in the Shoemaker house hold yesterday.

David lost two teeth! Though I’m not sure how good of news we should really make this.

The boys got up for school yesterday morning. Ate their banana and peanut butter, got dressed and I put David’s shoes on him, why I was doing that he ate his cereal bar. Why I put Matthew’s shoes on him (it’s faster if I just do it myself, the boys take after their Dad… they are SLOW). Well David went to sit in the blue chair. He says “Mommy my teeth hurt, one is wiggly”. So when I was done with Matthew I got up off the floor and David showed me…

Bottom front two teeth… one was GONE (we are guessing he swallowed it) the other was just hanging there. Well I freaked out just a little because for one we were running late. When I brushed the boys teeth the night before the teeth were fine, he didn’t complain about them being wiggly or anything, as far as I know when he got up they were there. How many times to you check your kids teeth as soon as they wake up? I thought… OMG now we have to make an emergency trip to the dentist.

I called Paul at work, he told me to call in sick and take care of it. Well I calmed down by this time, realized… I’m not calling in sick over a lost baby tooth and waste a sick day… we are going to be late… oh well… I pulled the dangly tooth off and looked at his mouth. Called the dentist… they don’t open until nine. David wants to go to school so that’s what he’s going to do. They are baby teeth anyways. I made a quick call to his teacher to let her know so she wouldn’t see him and wonder what the hell happened to him.

When I called the dentist after they opened she gave me the option of bringing him in or just assumes they were loose and needed to come out. I decided to assume they were loose. Like she said… they are baby teeth no harm done. I made a appointment for a cleaning for the boys in two weeks, they can look at them then.

So after I got home from work, and we talked about it with Paul, what we get out of the boys is that David maybe hit is face on the wall. I don’t remember anything from the night before. David never cried, said his mouth hurt or anything to clue us in as to why all of a sudden two just fell out. We tried to get out of David if the other tooth fell out or he swallowed it but then I vaguely remember when he was eating his banana I heard a crunch sound and thought that was odd but didn’t think much of it because Matthew was talking about something else and David never said “oh my tooth fell out”. So we are just going to take it as he swallowed it, and we are not going to dig it out of his poop.

As for what the hell happened to make it fall out… I give up on that one. We will probably never know and David will just have to be toothless for a while.

All I can say is “There is NEVER a dull moment in my house” and that’s the truth.