Monday, January 19, 2009

Five Months Old



Our little man is five months old already. Time sure does fly these days! I love this picture of him. It just really shows what a happy guy he is. He doesn't go back for a well child check until next month so I'm not sure how much he weighs and all of that. He's still a very happy little boy. He can roll from his tummy to his back but he can't get back over yet. He has his first cold right now. I feel so bad for him. His sheet in his bed is just soaked in the morning from drool because he's sleeping with his mouth open in order to breath. Poor buddy. He has his older brothers to thank for this one. Hopefully it will pass quickly.

Tuesday, January 13, 2009

The Diagnosis

The official word is that Hanna does have Celiac Disease. I was a bit skeptical at first because the doctor lingo wasn't very clear. Chris put a call into a very helpful woman from GI at DeVos and she was able to pull up Hanna's file and explain things very clearly. There is no question that Hanna does have Celiac and this "flare-up" was pretty severe. It will take some time for things to get back to "normal" but she should be fine if we stick to the strict gluten-free diet.

While we'd still rather she not have to deal with this inconvenience, we're thankful that there is treatment for her and a great prognosis and bright, healthy future.

Thanks for all of your prayers and well-wishes during this stressful time. We hope to be the same blessing to you in your times of need as well!

God bless!

Friday, January 9, 2009

Already Today:

Already today our precious "Pot-Belly" has consumed:

-8 oz. of WHOLE milk
-4 oz. Welch's 100% grape juice (with a little sparkling water for fun!)
-6 gluten free graham crackers
-2 slices of cheese
-one bite of gluten free mac-n-cheese (I think this was when she realized that her stomach can't hold this much stuff and she put the spoon down)

This is more than she's eaten in days!!! Go Hanna!!!

Thanks for all of your prayers!! We could hear today on the official diagnosis, I'll let you know.

Wednesday, January 7, 2009

Done

It's over and we are home.....(...long exhale.....).

Of course Hanna suspected something was up as soon as we pulled into the parking ramp at the hospital. She is too smart! She put up a good fight when they started the IV but they got it on the first try. Hallelujah!!!! So thankful for peds nurses. When they gave her the sedative she was out in like 4 seconds...not a good feeling as a parent. We left the room after she was out and they came and got us about 10 minutes later. While she was waking up we met with the nutritionist who gave us some awesome information and resources! Hanna woke up and started devouring her snack a few minutes later. The sedative they used didn't make her feel yucky so that was very nice.

At the moment, she's eating some more and bragging to "Lukey Jay" about the prize she got to pick out. I'd say she's feeling pretty good.

The GI Dr. said she couldn't see any evidence of the effects of Celiac with her scope but it isn't always the case that you can see it with the naked eye. She thought we might have the results from the lab as early as Friday but most likely Monday. She did say she took samples from several areas in case they need to look for something besides Celiac. "Yes", I said, "let us spare the child from any more trauma!".

Thanks again for your prayers!!!

Procedure

Today is Hanna's biopsy to confirm the Celiac diagnosis. She is so very sad right now because she can't have anything to eat or drink. Of course now that she's back to being interested in putting things in her mouth, I can't let her! I'm so anxious to be done with all of this and get on with it! Hanna has been through enough.

We have to be back to DeVos at 10:30 this morning and the procedure is at 11. I'm a little HOT that they couldn't do it first thing in the morning for the poor kid, but that's neither here nor there at this point I guess. They say the procedure itself only takes 5-6 minutes. Getting the IV for the sedation is going to be the tricky part. Please pray that it goes very smoothly for her! I just can't imagine them having to poke around 5, 6, 7 times again. Can't they make something to sedate kids that they drink? Seriously!

OK...I'm done with my rant. I'm off to console my sad little girl...hopefully for last time (for a REALLY long time!!!).

Thanks for your prayers. I'll let you know later today how it went.

Monday, January 5, 2009

HOME!

Hanna was able to come home today! Yay!!!

The GI folks are very sure that what she has is Celiac Disease. There is one more test just to be sure and that is scheduled for Wednesday. She'll need to be sedated and they'll do a biopsy by way of endoscopy. The procedure is scheduled for 11 a.m. and she has to do the whole no food or beverage thing. Should be interesting to explain that one to her when she gets up that morning!

We're so glad to be able to have her home. She was extremely happy about it too! The boys were glad to see her and she them. She's taking a power nap right now. I wouldn't be surprised if she just sleeps until tomorrow. I would like to do that myself and I'm not the one that hasn't eaten in weeks or slept much in the last few days.

I'm gathering information on a gluten free diet so if you have any great resources please let me know. We will meet with a nutritionist after Hanna's procedure Wednesday and I'm sure he or she will have lots to share with us.

Thanks SO much for all of your prayers and calls and well wishes. What a blessing to be surrounded by such wonderful family and friends!

Sunday, January 4, 2009

Sunday

Today was a very slow day. We still don't have anything definitive. There was an antibody present in her blood which they are now testing further to see if possibly she has Celiac Disease. From what I've learned today Celiac is an auto-immune disease where you can't tolerate Gluten (wheat). This would be something to adjust to but definitely do-able. Like I said, they are now running a more specific test that will tell them more. We should find out the results of that tomorrow.

They are also still testing for Ghiardia. They needed 3 separate samples for that and they now have them. No word on when we might here about that.

Hanna slept ok last night. I don't think Chris did. Hanna ate a lot for breakfast but then felt pretty miserable the rest of the day. She took one pretty good nap and did lots of snuggling. Not a lot of smiles or talking today. She really just seems exhausted and REALLY wants to go home!

Please continue to pray for an answer and for Hanna as it's very difficult for her to understand why we aren't taking her home...poor baby.

Thanks so much!

Saturday, January 3, 2009

Today

Hanna was admitted today. She started off the morning looking really good. Our pediatrician had actually set things up last night already for us to bring Hanna to the hospital today. We really feel like yesterday and today she made some big improvements but are still frustrated and confused about what has been going on with her this past month. First thing this morning we were thinking the people at the hospital were going to wonder why on earth we were bringing her in because she was eating like a horse and very happy and talkative. But as the day went on some of her old symptoms starting coming back and we knew that we just needed to get to the bottom of all of this.

We haven't gotten very far today as far as figuring anything out goes. Most of today was spent telling and retelling all of the happenings from the past 4 or so weeks and waiting, and waiting and did I say waiting? We're very thankful though for great local medical options!

Things get slightly tricky with 4 kids when one goes to the hospital. We've got it under control at the moment and are very thankful for the help and prayers of family and friends.

I promise to update here as often as possible. I have NO idea how long this will all take. I'm hoping she'll be home tomorrow night but I can already hear some of you saying to yourselves, "good luck". I'm a glass half full kind of person people and that's not a bad thing to be.

I'm so very thankful that she's doing as well as she is and feel very confident that she's where she needs to be and held in Hands that are way more capable than mine!!!!!

Good night for now.

Uhhhh.......................

I was so hoping it wouldn't come to this, but unfortunately we are headed downtown with Hanna to figure this thing out. The poor kid has dealt with this for over 3 weeks now and it's time to get better. Please keep her in your prayers. We'll keep you posted.
Thank you!!!

Negative Test

So the test for Ghiardia was negative and I'm told that the test is about 90% accurate. That's not at all what I've been told by other adoptive families that have dealt with it. I guess I'm not totally convinced.

Anyway, it's decision time. We'll let you know what's going on later today.

On the brighter side, Hanna is much happier today. She's eaten quite a bit already and has walked on her own. She's more interested in playing and talking. All great to see and hear! If I were to make a call, I'd say either the medication she's on or the dairy-free diet were the key. She's definitely improving.

I'm praying that my next post can include even more improvements!

Friday, January 2, 2009

Hanna today

We saw our pediatrician today. Hanna lost 2 more ounces. Not great news. It's not a lot of weight loss but any weight loss for her isn't good. The Dr. didn't have the results that we were waiting for. He said he would contact us this evening with those and a decision about where he'd like us to go from here. So frustrating.

Hanna still isn't very interested in eating. She usually gets up in the morning and seems perkier and hungrier. She eats a little and then she starts to go downhill. She gets crabbier and more tired. By evening she's just miserable. She's still having the terribly smelly and messy diapers. Nothing really seems to be changing. She's had 6 doses of the new medication so maybe we'll start to see some improvement soon if it is the parasite that she has. Let's pray we've got this figured out!

I'll update here again tonight after we talk with her doctor and know the test results.

Thanks for your prayers!