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Saturday, April 21, 2012

And it's a Slam-Dunk

I woke up this morning remembering that China doesn't let you in or out of the country if you have a fever. I think I was so not willing to entertain the idea of traveling without my kids, that I forgot about this little detail. In fact, I wrote about this on my blog earlier in this adoption process and at the time I called such a notion a deal-breaker. But God has given me peace about this.



I told Maddie last night that I was almost certainly traveling alone. She took it very well. I'm hoping we can skype every night and I told her I was going to leave gifts for her and Ava, one to be opened daily while I'm gone. My plan is to e-mail the coordinates for each gift daily, so my girls can't dig it out of my mom and my sister sooner:) If Maddie is up to it, I'll schedule the girls for swim lessons or gymnastics or an arts and crafts class(es) while I'm gone. It will make the week fly by.

(I know there are several Mamas--single or otherwise--struggling with the same decision and I will come back and post the ideas I came up with to keep my girls busy and how well they worked.)

So, I will apply for my travel visa this week. I wouldn't be surprised if my TA arrives this week as well. I still don't think I'll leave for China before the second week of May--no hotel rooms are available due to the trade fair and then the first week of May all govt. offices are closed due to their labor day holiday. So, as I'm leaving on a Saturday evening, that means May 5th, 12th or the 19th.

Wednesday, April 18, 2012

Some Decisions Just Suck

Maddie had a particularly bad weekend. High fever, joint aches, sore throat. And those %^*&! blisters. She ate pretty much chicken broth for three days. I messed up. I misunderstood about when to give her the predisone and what it is actually good for so I didn't give it to her. If I give it to her when her fever first starts it could stop it and her sore throat or at least cut the time she's suffering these symptoms in half.

Anyway, she looked so sick and she was almost listless at times. Makes me very sad. Her, too.

It's also made me consider and reconsider and re-reconsider taking her to China. An adoption trip is exhausting. So much needs to be done, at various government offices, at different times of the day. . .it's definitely no vacation. The adoption trips for Maddie and Ava were wonderous, but by the end I was weary and ready to return home. Maddie and Nana were ready to get home last time, too. And western medical care is not available.

At first, I was going to bring my girls and my mom with me. It's such an important family event. Now, I think I'll be going alone.

This is such an agonizing decision. I can't imagine being away from my girls, especially when one of them is sick. I can't leave Noelle in China. But I can leave my girls with my mom, knowing they are loved, safe, and well taken care of. My sister will help. She loves my girls dearly. I'm thinking of asking my brother to come down. The girls love spending time with him.

I'll be gone less than 7 days (barely). My most wonderful agency is working with me. They have submitted an itinerary to Chinese authorities to see if they'll expedite me in-country. This means I'll leave late on a Saturday evening and return early the next Saturday morning. It means days stacked with paperwork, a medical exam, then a recheck of the TB test, filing for Noelle's passport and visa, etc..

The pros of this schedule is that I'll be so busy I won't be able to dwell on how much I miss my girls. Noelle will get home sooner and get the medical attention she needs sooner. . .

And yet I'm dragging my feet on filing for my visa, which I need to travel to China. If Maddie gets better sooner than it's looking, if she's at a good point in the cycle, if the meds work, then we could travel as a family. So I'm waiting. I may have 4 visas to file for. I want travel approval in hand, itinerary approval in hand before I send for my visa. It only takes 5 days. . .

And what I really want more than anything else is for God to speak to me on this. Everything is laying out in such a way that traveling alone seems to be His will. I hope to be surprised.

Tuesday, April 17, 2012

Love My Necklace

Saturday, April 14, 2012

Acceptance I

It was a difficult decision for me, to move Maddie to a home schooling program. To take her out of her social group and out of her 'normal'. She has been letting me know, since November, that normal just wasn't working out. The fevers started in November and she was never without a blister. With the fevers came a sore throat and hoarseness, swollen lymph nodes and, eventually, pain in her joints. Even sipping a milkshake was painful. She would go a day or two with minimal calories. She had meltdowns. Some meltdowns she wasn't able to stop herself and the only way she could be calmed was with me lying beside her, her head on my chest and me rubbing her back.

She missed a lot of school. Gave up one of her gymnastic classes during the week. Her health wasn't improving. We had entered a cycle of fever and sore throats, etc. every 3 1/2 weeks and always those blisters. Ten days ago we met with a specialist who was able to firmly diagnos her. He's a wonderful doctor who knows her condition and I am grateful to have him. But there are still unknowns. For example, we don't know if the medicine he started her on will work, but we hope so. We don't know how long she will continue to deal with this condition, but we do know that it is not lifelong and that there will be no lasting damage from it (thank God). But there will be pain--lots of it.

And we know we have to keep her pain meds at a minimum in order to keep her liver and kidneys healthy.

Thursday, Maddie went to gymnastics class. She wanted to go. I wanted her to go. I wanted her to have this little slice of normal. She felt better, and I felt better, watching her on the mats, talking to and laughing with other girls her age, moving through jumps and twists--her body proof that she is strong and, well, healthy.

Only she's not and it is so hard for this Mama to accept that.

After class, Maddie was tired. Unusually so. She slept fitfully and woke up twice calling for me. I was able to give her pain medicine, but only so much. Friday she woke up with a sore throat and spent most of the day laying on the couch. The aches in her joints flared up last night. Today the fever is starting. I will watch it climb. I will give her motrin when I can, but it only takes the edge off, at best, and I'll snugggle with her, to help her manage the pain that the meds don't touch.

My big girl is sick. It's serious. And for a while, our normal is going to look very different.

Friday, April 13, 2012

Joyce Meyer. . .

was in town today. Mom and I went. We've been listening to her preaching for a few years now and we really wanted to experience it in person. I'm glad we did.

Thursday, April 12, 2012

Diagnosis

The results of Maddie's bloodwork came back--and it looks amazingly good. So good, the doctor sounded both surprised and pleased. All the really bad stuff have been eliminated and we are soundly within a diagnosis that is best case scenario.

Maddie does have the Periodic Fever Syndrome (see earlier posts). She has been on medication for this for a week now, but my poor babe has new blisters in her mouth even so. The doctor called last night (two nights in a row--we have a wonderful doctor). He doesn't expect to see the blisters clear up for another three to four weeks at least--when Maddie is at the proper dosage for her weight.

So, yes, we are going to home school. Sort of. I'm looking into a program where Maddie goes to school two days a week and studies at home the other three. There are field trip opportunities spread throughout the week, as well as study groups and online teaching. The program sounds a lot more rigorous and fun than regular school (where I teach:o). While I get this set up, Maddie will stay home on contract and complete missing work.

We have to limit the amount of motrin she can take, as the doctor was concerned that she's been taking it for so long (2 1/2 years into painful symptoms to finally get a diagnosis--I have a post planned about this--though she's only been taking the motrin daily since November).

Tuesday, April 10, 2012

To Home School or Not?

So this has been knocking around in my mind for a few months now. In November (after 2 years of other symptoms), Maddie began to cycle through fevers and she began missing school. A lot of school. She tried to return a few times, and even got a week or two in before the fevers or other symptoms came back. By the end of January I knew her then-diagnosis was wrong and began seeking even more expert opinions. Last Wednesday, we saw a specialist who seemed to nail it. We are still waiting on test results (poor babe had 6 vials of blood drawn last week), in order to rule out the most terrifying possibilities, such as leukemia and lupus. But Maddie's symptoms match, exactly, periodic fever syndrome. So much so, the doctor started her on the medication for it. The medication is so strong that she can only start with a quarter of the dose needed for a child her weight, and build up to the correct amount over the course of a month (or longer if her body needs longer to tolerate it). Periodic Fever Syndrome is a childhood illness that is just emerging as a major player in the field of medicine (so Maddie is now in a medical study--uninvasive, of course--that we hope will help the doctors better understand her and the children after her who have the diagnosis).

Anyway, yesterday I put Maddie on contract with the school. This was hard to do, as she loves school, is very social and earns top marks in academics. She is so bored at home, but most days won't even consider going to school. The symptoms are painful and it's just too much. I have 2 weeks to decide about switching to home school for the remainder of the school year. Socially, Maddie will have gymnastics and maybe soccer, when she feels well enough to go. But is this enough?

 My big girl.

 My middle.

What's growing in my garden right now. I'm including this photo because two weeks ago there were NO buds on this scrawny little plant. Despite more than a year of nuturing this rose bush, it looked more dead than alive and I had just mentioned to the girls that we would need to find a replacement plant as I would be pulling this bush out. I had given up on it. Well, this plant has become a new symbol for me, of my adoption journey to Noelle, and of my life period. The past year has been rife with challenges and I have felt many emotions about it, from anguish to anger, then I would reclaim my faith and wait with anticipation and even excitement for what God would be doing next--some moments have been truly beautiful to witness. Right now, I'm holding fast. I feel a little quaking on the inside, but I'm pushing past the fear and keeping my eyes wide open. There are two full-blown flowers now on this rose bush and 4 buds about to burst open. I don't want to miss a thing--God is at work and He always has our good at heart.