Aftershocks

Last week Maddox stepped on a picker while he was barefoot.  The screaming and sobbing was unbelievable.  While I was trying to help calm him down, he yelled "But it feels like a poke from the hospital".

Oh sweethart.

I had to talk him down and have him repeat after me, "I'm not getting a poke, There aren't any needles, I am at home, I am safe, Mommy and Daddy are with me, Mason and Jack are here etc...".  It was heartbreaking to see and hear.  It took a good 15 minutes for him to calm down. (Then I had to repeat the same things to myself ;) )

Ever since the hospital stays, he becomes very upset with any scrapes or cuts that bleed.  He cannot stand the sight of blood anymore and just panics when he sees it.  Blood never used to bother him before.  But he had some messy IVs at the hospital, so there you go.

Mason is still dealing with some stuff as well.  Maddox had a follow up appt 2 hours away yesterday, so I had a babysitter (we now have TWO babysitters) hang with Mason at home.  He was anxious that Maddox would have to stay at the hospital and that Mason would be alone with the babysitter.

I suppose it will be a while before we aren't reacting in these ways.

Maddox came down with a cold over the weekend which meant there was vomiting and retching again, however, it wasn't anything like before and we were able to manage it, even though it meant he didn't get his full feedings for a couple days.  I am starting to feel more confident when he is sick, because I feel like Craig and I have a plan of action, so we aren't just pulling stuff out of our behinds.

Maddox had a follow up appt yesterday.  He is 36 pounds (he lost a bit from the weekend) and is 40 inches! He is at the 25th percentile for weight and height.  I guess they want to see him at the 75th percentile.  We did get the go ahead to decrease the time he is on the feeding pump for 1 hour for 2 weeks. If he makes up the calories lost on his own, we can decrease by another hour for 2 weeks and so on.  If he doesn't make up the calories, then we go back to 15 hours.  Whoo-Hoo!!!

Can you hear the angel choir singing?! I can!
This is the first step of weaning him off the feeding tube.  Our GI doctor was very impressed with the amount of food Maddox is eating and the change in his weight and height.  He feels Maddox's stomach and GI system finally "grew up".  I am guessing the entire system has matured.  Hooray for maturity.

The doctor also said that when we go camping, we can just leave him unhooked from the feeding pump the whole time.  We aren't quite ready for that.  It would be 3 days without enough nutrition and that would leave Maddox tired and cranky. Not a good combo for tent camping.  We will only hook him up when he is sleeping, so he won't need to worry about it while running around.  bbWhat a gift for him!

Those are the big things happening around here. 

Mason and Maddox have reached a new level in their sibling relationship.  They are playing board and card games together, playing together and are pretty inseperable.  Mason even camped out in Maddox's room two nights in a row.  The giggles and laughter were plenty.  It's heartwarming to see this development.  I hope they remain close throughout their life.  (I'm not saying they don't have their moments, they are normal, but this is a big thing around here)

Jack has turned into a very naughty dog.  I am hoping it is just "adolescence".  Training does not start until the middle of July.  He is still a very fun dog.  The boys taught him how to "beg".  It is very cute.  He is a fun loving, mischevious, smart dog. He is kind of like a dog version of Maddox.  But Maddox's personality is much bigger.

The Business of Eating

Maddox is eating.

A. Lot.

It's unbelievable.

He is eating baby carrots, pea pods, orange and apple slices, beans, peas, corn, all meats, mango. He has tried and eaten a leaf of spinach, blueberries, golden raspberries.

I do not know who this child is.

It's amazing. I tear up thinking about it. What a gift! He is excited to sit at the table for meals and he is excited for his food and excited to try new foods and he is so very proud of himself. This boy, the one who gagged looking at many foods, who would take a bite and say "I'm full", who would become anxious at meal time and who would cry. I am amazed at this change in him and I need to give God all the credit.

We had people come from our church and pray for Maddox and our family once a week for several weeks. This is when the change started.

I have to admit I had a hard time typing that. I have always struggled with the healing part of God because so many people pray for healing for themselves and loved ones, and people still aren't healed. I have friends and family who have lost babies and children who never wavered in their faith and never gave up asking, and God didn't heal.

I don't know why God is healing Maddox, but I can't deny the fact that He is. It certainly isn't because I am super faithful and never doubt or question. Or that I am some super Christian. In fact, I never really asked God to heal Maddox because I just didn't believe in that part of God. But I came to the point where I had no other choice. I really didn't. And so I started asking God to heal him, and when I was exhausted and tired of asking, I asked others to come and ask for the healing.

I am tempted to delete everything I just typed. I am conflicted with sharing all of this. In my heart I am grateful for the healing God has done, I just don't feel right sharing it. I certainly wouldn't want to hear about some healing going on in someone's life if it wasn't happening (or didn't happen) for my loved one. Maybe that's just my immaturity showing, but it's how I feel. And yet, I feel I need to give credit where it's due. But not in a gloating, boasting, bragging way. It's actually very humbling when I think about it.

Wow. This was just going to be a post about how well Maddox is eating. Let me know how you feel about all of this (ha! That would be about 2 or 3 opinions ).

But the good news is, Maddox is eating!!!

I Love this Dog

Jack is a great dog. Today we found out he can climb trees a bit. We are going to have fun with him. Mason and I are going to try and train him for agility. Jack loves the boys and they are his people. He needs to be where they are and they need to be where he is. It can get crazy around here at times, but it's a good crazy.






Look at that face.

















Tired puppy.











I love these pictures of the boys and Jack.


Mason keeps drawing pictures of Jack.

Camping

Last night Craig and I decided we are going to tent camp with the boys this July. Feeding tube and everything.  yep. 

The biggest obstacle was how to make Maddox's formula while camping.  Before this new combination of the two formulas we could make it a bottle at a time if we needed/wanted to. We can't do that anymore. We have to make the entire batch at once in a blender. We also needed a way to safely clean his bottles. This is how we solved those problems:

We will get a site with electrical and bring a dorm fridge.  We will also need to bring our blender to make Maddox's formula.  I purchased a ton of those 10 ounce disposable sippy cups and we will mark the ml and ounces on them.  That elimnates the need to wash bottles. I will also have the formula all premeasured and mixed for the number of nights we will be there.  And with the electrical site we will be able to charge his feeding pump.  I am also going to ask his doctor if we can decrease the amount of formula Maddox needs while camping to make it a little easier on Maddox.  I'd like to decrease the time he needs the feeding pump by 3 hours.

The dorm fridge was not my idea. I was talking with a friend during Mason's Spanish class about camping and the challenges and she suggested we bring the fridge. That is what her parents do.  We will need to come up with a plan in case it rains.  I was so bummed yesterday, because when I was talking with my friend about camping I had realized it wasn't going to work (or so I thought).  I couldn't figure out how we were going to wash out the bottles and use the blender and make up his formula in a clean and sanitary way.  I was almost depressed for most of the day.  But last night I told Craig, we ARE going to tent camp and we WILL make this work (I have no idea where Maddox gets his strong will from).

So, that is the plan for now. Please pray this works. I know I am going to start praying \'] (those odd symbols are courtesy of Jack) now.  I just don't want this feeding tube to stop us from doing anything we normally would do (as long as Maddox is safe) .  We are also bringing Jack.  I am sure that by the end of the camping trip I will be crying or drunk or quite possibly both (that fridge will be full of formula and wine). BUT, we will have gone camping.

Happenings

This was written January 9th, 2012. For some reason I did not post it, it was in my "drafts" section. I am posting it, so I don't forget it.

Things have been going pretty well since my last post. 

I am so very grateful for so many things in my life.  Grateful for a husband who will pick up the slack when I am too exhausted or when I need to lay down as soon as he gets home. I am grateful for overall healthy children.  I know Maddox has a feeding tube, but he could have so many other things as well.  I am grateful for family who is close by and able to help, friends who listen and pray, and I am grateful for our health insurance. 

I am grateful for God and his help during this time. I do have to admit I often struggle wondering why He allows things to happen and why He doesn't stop them.  Especially things that happen to children.  I know He is all good and loving, this I know to be true in my innermost being. And yet, sometimes that doesn't jive with what I see happening with Maddox or other children. And I do not profess to know why things happen to children (or other people).  I have no answers. I could say all the regular things "It's a broken world, all things happen for a reason, God works all things for good, etc.." but those sayings are all trite when you see your child suffering.  I do know that sometimes God heals here on earth and sometimes he heals in heaven.

I cannot do this without God though.  The days that I do try, it always ends up exhausting and non productive.  When I give the day over to God and trust Him with Maddox and the rest of the day, I am so much more peaceful and productive, and the day flows. For example, last night Maddox threw up again (I didn't hear him calling over the monitor and I got to him too late.  He was crying "why did it take you so long mommy? Why did it take you so long?") and was up off and on during the night. I was getting anxious about the next day because school was starting up again and I knew I was going to be exhausted, but I gave it over to God and today was great. I was tired, but everything that needed to be done was done and I had a great day with the kids.

Tonight I was driving and just started crying. Crying for Maddox, for Mason, for myself.  I am sad that Maddox has to have this feeding tube. I am sad that I cannot fix this with a bandaid and a kiss. I want to fix this for him.  I am sad that this is turning into more of a long term deal. Back in August we were told this would be a 3 month thing with just the ng tube.  Now we have a g-j tube and he is struggling with throwing up.  I fear that there is something physically wrong with him that we don't know about yet and that he will need this for life.  That breaks my heart.

I am sad for Mason.  Maddox needs a lot of attention right now and I am exhausted during the day because Maddox also needs help throughout the night.  I feel bad that I cannot give Mason the attention I used to give him.  I know this is a season.

Hellooooo

So, it's been a while again.  Which usually means things are going well, and they are.  I feel bad only posting about the hard times, because that isn't an accurate picture about what goes on over here.

For a little over 3 weeks, Maddox has been tolerating his full feedings at his full rate.  He is getting all his calories and is gaining weight.  It's a beautiful thing.  The puke buckets are put away, we aren't under constant alert, and we can actually do things again.  It feels like a normal life again. At least a normal life with a feeding tube.  Maddox has recently gotten more stamina and endurance for walks and play and he is also taking 2-3 hour naps a day in the afternoon.  It makes for some late nights some times, but without the nap he falls apart.  I am assuming he is growing as well.  It's amazing what nutrition does.

Mason is doing well. He's a bit tired of his little brother, because with Maddox's increased nutrition and calories, he can be quite a bit of a stinker.  Mason continues to do well with schooling and his sense of humor is maturing, and he is quite funny  most days.  He is also getting taller and taller and taller.  It won't be much longer before he is taller than me.  A few days ago he told me he isn't going to college because he is going to be an agent, or detective, or cop.  Once he understands the difference between the three he will choose.  Love my Mason!  Mason also loves watching black and white episodes of Rin Tin Tin, the old episodes of Batman and Lost in Space.

Maddox is still into his superheros and dressing up. He has also developed the fever for Legos! He and Mason can build with them for hours.  It's nice because Maddox can now build his own creations so he is feeling pretty good about that.  He has been interested in school as well and needs to sit down at the table with Mason.  I found some preschool units on Batman and Star Wars, so he has been very happy with that.  Those are some of my favorite moments. Sitting at the table with Mason and Maddox, helping both of them with their school work. 

Jack the dog is amazing.  He has been a bit of a stinker lately though.  Just refusing to listen and he had been listening so beautifully.  Training doesn't start until July, so hopefully he doesn't get too out of hand before then.  He isn't awful, just testing. We absolutely love him though.  He fits in perfectly with our family and is a dream with the kids.  The boys love him as well and I am sure Jack gets more hugs and kisses than he would like.

So, these last few weeks I have come to terms with the fact that our lives are not exactly "normal".  Our son has a feeding tube and that is not "normal".  I still fight tears when strangers look at him differently or when people think Maddox has on a harness thing with a leash.  We actually get that a lot.  People will chuckle and smile and comment on the harness.  It's hard not to scream "It's a backpack with a feeding pump!!! He has a feeding tube connected through his stomach!!!".  It's not all the time, but it happens enough.  I have also accepted the fact that there is no end point for this feeding tube.  I do not know how long he will have it.  No one knows.  I had to give up the dream that it would be short term like they originally said. (Initially we were told he would have the nose feeding tube for just 3 months; that was 8 1/2 months ago).

I have also accepted the fact that when Maddox gets ill, he will not be able to tolerate full feedings and he will probably lose weight and we will need to adjust the rate and strength of his feeds to keep him out of the hospital.  And that's OK. (well, it isn't completely ok, but you know what I mean).

I would love nothing more than for Maddox to be completely healed and to be able to eat enough on his own. That is my daily prayer, but I am also grateful that he is doing well, growing and is currently healthy. 

The Little Things

Maddox had a rough night last night. He is a vivid dreamer, so the first few hours were spent helping him find Lego pieces in the bed. He was dreaming a house he built broke in the bed and he would hold out his hand to me with then"house" in it, crying because he couldn't find the pieces. It's weird. He is dreaming, but he can interact with me, so as long as I could convince him I found the pieces and put them in a safe place, he was fine. Then he woke up at some point saying he couldn't find the way and didn't want go down the secret passage, so I had to "show" him the other way to get home. It was an active night.

He didn't start throwing up until about 2 am, but he was whimpering all night. And he didn't throw up as badly as he was when we were admitted to the hospital.. I did need to stop his feeding earlier than usual this morning, and I had to decrease the rate of his feed last night.

This afternoon I hooked him back up at the normal rate for 2 1/2 hours to catch up a bit and he threw up after the first 45 minutes, then threw up about 20 minutes later, but stopped throwing up after that and fell asleep. And he wasn't throwing up the nasty stuff like at the hospital. He didn't get all lethargic either. And the area around his button isn't all irritated, which is good, because it gets painful if it is.

So, today I am thankful for the little things:
Not as much puking.
No lethargy when hooked up.
The skin around his button is good.
He isn't throwing up the nasty stuff.

As soon as I finished typing this, he started throwing up right after getting hooked up for nighttime feeds and it is the nasty stuff. Ugh. We are going to wait out the weekend before calling ( unless things get worse). He still has this junky cough and that is triggering most of the puking. Cough medicines don't seem to help and the home care nurse listened to him yesterday and his lungs sounded ok. Thankfully Mason is spending the night at his friend's house tonight so he doesn't have to see this. Well, off to bed. We'll see what tonight holds for us.

(Jack decided to join in and he threw up his food tonight. He's probably allergic to it)