How?

How on earth did my baby boy grow into this Lego loving, Harry Potter watching, Magic Tree House reading, TaeKwonDo belt earning, piano playing, 8 year old young man?

I do not know. But what I do know is that every day, slipping by this fast, is a precious one and I am so glad to get to spend those days with him.

Happy 8th Birthday Little Zachary!!!!

Dates

Lucy's suddenly got a lot going on over the next week or two. Friday is her appointment with the behavioral therapy, she just got scheduled for her GJ placement next Wednesday, shes due for a visit with our pediatrician, and now it turns out she needs an EKG before her pain medication can be prescribed. Oy!

The bad news is that Wednesday I may end up going solo because Big Zach isn't certain he can get away from work. I hate going into an appointment with sedation alone because there is no telling how Lu will react. When she was sedated last October it blew up into a nightmare and our doctors worry that it could happen again- its one reason why this procedure has been put off for so long. I would hate to be caught in a scary situation without my husband around to help. I am praying he can work it out without upsetting his job.

It's overwhelming but all seems necessary. I really really hope that this all leads to easier days for Lucy. Its been a long time since shes been able to get comfortable and stay that way. I want to see her downward spiral stop.

Thank you so much for checking in on Lucy. Thank you for all your thoughts and prayers!

We've been dogsitting this guy all week. He's alright, other than being a trash eater with a serious craving for q-tips, he's relatively calm. He has slept with Lu every night and is great for snuggling. He might be a little....on the slow side, but hey he's a dog.

I am feeling pretty good about moving forward with the GJ tube for Lucy. I am ready to get started on something so that things will get better for her. Her psych appointment is all set up for next Friday. We will see how that turns out. It seems that the intent of this program is to teach Lucy to ignore her pain, and I don't know if I feel thats ever a good idea.

Today is my birthday. Zachary is away at the beach and Lu is spending tomorrow with Pop and Joy so that Zach and I can have a fabulous day out! We are so excited!

GI Update

Lu had her appointment with our GI, Dr. G, today. Mainly, we were there to discuss all of our testing from Ohio and decide which recommended treatments to go forward with. Lucy also had a weigh in and came in with another 1/2 lb weight loss- bringing her to 27lbs at 4.5 years old.

We spent a fair amount of time discussing Lucy's nutrition, or lack thereof. She is showing significant signs of dehydration and under nourishment. She is tired much of the time, taking afternoon naps that are hours long and not walking more than a few feet before begging to be carried. Shes also having severe leg cramps that leave her screaming that her "legs are breaking". Shes constantly cranky and irritable. Anytime we take her out for an activity, even if she manages to keep up, she ends up spending most of the next day laying down to recuperate. It really makes me sad.

Dr. G spent a lot of time explaining all the results to me, so that I could understand. Basically, Lucy's testing revealed that she specifically has a problem with the nerves and not the muscles in her GI tract. There were contractions that were completely missing and then ones that were random. She also had a few "retrograde" contractions which means her body moved things backwards. We were put into the moderate category in terms of severity, because they still feel Lucy has a usable GI system that can nutritionally sustain her. We just need to do a few things to try and get her body to start processing enough formula so she can grow and play.

So, to start, we are going to switch Lucy's G tube out to a GJ button. The GJ button will be in the same spot as her current tube (the current will be removed) and will have a straw that snakes down into her small intestine. This procedure is done in radiology as an outpatient, although it does require sedation. We are really hoping it works, but because of Lucy's documented retrograde contractions it may not work out. The retrograde contractions could cause the tube to coil up inside of her stomach. But the good news is that if this doesn't work out, its can simply be removed and we can put a regular ole' G tube back in. Hopefully, by switching to a GJ we will be able to speed up Lucy's feeding rate so that she can start packing on the pounds.

Next, we discussed Lucy's issues with pain. Things have progressed to a point that Lucy is miserable much of the time. Pain is a daily occurrence for her and its literally making her mad. She sleeps horribly, gritting her teeth, talking in her sleep, and sweating through her clothes. Shes completely wearing down and is falling apart. So, in order to get a long term handle on the issue we are going to do two things. First, is to try out a pain medication to specifically help with nerve pain. Second, is a form of behavioral therapy to help her learn how to properly cope with consistent pain. I am truly praying that we are granted relief soon. Lucy desperately needs it.

We also decided to switch out Lucy's pump to an even smaller and lighter one. This is going to lighten her load and hopefully make less work for her.

I am definitely pleased we FINALLY have a plan to move forward with. I haven't processed things enough to decide if I am pleased, scared, or disappointed. So I may follow this up in a day or two. haha!!

As always, thank you so much for checking in on Lucy. We appreciate all the love and prayers!

Oh and I also want to say "thank you" to Grandma, who took Zachary out to the aquarium and spoiled him today while I was busy with Lu!

Finally!

Lucy's info from Ohio has finally come in! About time! Our GI has squeezed us in for an appointment next Tuesday and I am eager to discuss it all with him and see what he does/doesn't want to do.

Our girls weekend went great! Lucy caught a cold the day the boys left but still wanted to shop, hang out, paint nails, and get her hair cut. She just took the opportunity to nap in between, which was okay by me! The boys also had a great time visiting Big Zach's sister. They got to check out some neat stuff in the area and spend some time with Jess. Zachary can't wait to go back!

I hope everyone is having a good week!

Summertime!

We've just been hanging around. Nothing startling to report.

Big Zach is on vacation this week so we spent the 4th up late with friends and have been spending some good family time together. With Zach's promotion he works so many hours, its just been nice to have him with us.

Tomorrow the Zachs head off to visit Big Zach's sister. Its all Little Zach has been talking about for weeks now. They are SO excited to visit her! I know Aunt Jessie is so happy they are coming! Its going to be a great trip for the guys. Lu and I will get some girl time here and already have a few things planned, along with some visitors.

Thanks for checking up on us!!!

Brief Update

I don't have a whole lot to report.

Lu is alright. She had a rough day today, but seemed better after a THREE HOUR nap. We got some time, just me and her, to run to Target and shop. She managed to walk through the store, picked herself out a new pair of sunglasses, but by the time we got to the car she looked tuckered out again. Maybe tomorrow will be a better day for her.

No news from Ohio. I can see I am going to have to start nagging if I am going to get any results. I really wish I didn't have to do that.

I will update further later in the week. I just wanted to get something up here so as not to leave anyone hanging.

As always, thank you so much for checking in on us!!

And it just gets more boring...

Nothing dramatic to update with this week. My blog is a bit stale isn't it?

We've been doing the usual around here- spending time with family, ushering the kids here and there, school, housework, yadda yadda.

Lu had a particularly bad day today. Shes had a rough couple days but today was pretty bad. She had a lot of stomach pain, nearly vomited a few times, and had several blowouts. She kept complaining all day of not feeling well. It was pretty clear she was tired and really struggling to deal with everything today. It didn't help that she fell down several times and got "boo boos". I have no idea why shes had a bit of a spike in her issues the last few days, but I hope it stops soon.

Thanks for checking in on Lu, hopefully I will have something to report soon!

Boring

Not much terribly new here! No updates from Ohio, but Dr. G actually had his assistant call us because at this point hes looking for it himself! Lucy keeps asking when she will get the medicine Ohio promised her that would make her belly stop hurting. Ouch!

Last week we went to the beach for several days. Big Zach was out of state for a week, training for his promotion at work. The kids had a blast and it was great to just get some time to spend with the kids alone, no distractions!

Lucy seems to be tiring out more quickly here lately. After just about any activity she needs to sleep it off with a nap after wards. If she doesn't get her nap, look out, shes a grouchy grouch! I don't know if this is a sign her anemia has worsened or if its something else entirely- its been a chronic issue with Lucy tiring faster than most kids.

The kids adopted a praying mantis they found in the yard. Good ole' Google gave us easy instructions to create a habitat for him. So far he seems to be thriving, but I'd like to get him back to the "wild" of our urban back yard sooner rather than later because I just don't trust our ability to keep him alive. In the meantime, we'll call this a science lesson!

Zachary is deep into writing "books" of his own right now. I absolutely love it! I wrote my first "book" when I was six, which made its way to being published in the school paper. After that, I wrote countless stories and poems up through middle school as a hobby. Its so fun to see Zachary developing a love of writing too!

So far I am in love with our new DME(medical supplier). Every month they deliver our supplies with no problem, on time with just ONE phone call (as compared to late with 3 or 4 follow up phone calls just to get it sent). Not only is their service easy peasy, but their cost is significantly less. They charge about half of what our old DME was charging for the same formula! I am so glad we switched!!

Thats all the updates I have for now! Thank you for checking on Lucy and our family!!

Recital

Lucy had her recital this evening! She did AWESOME! She smiled the whole time and danced her little heart out. Afterwards we had our families back to our house for dinner. Lucy got lots of beautiful flowers and is so excited to go back in the fall!