Love My Necklace

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.

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.

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).

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.

Happy Easter!

 Dying eggs Saturday night.

 My flower girl.

An early morning egg hunt and Peeps for breakfast?

Moving Along

Yesterday, I received provisional approval from our govt. to adopt Noelle. What this means is that the US believes she is an orphan by Hague standards (rules in place to protect children) and I am now waiting on two more documents, one from the US consulate in China acknowledging the approval, and the other from the central authority in China inviting us to travel into the country for the purpose of completing Noelle's adoption. With the medical expedite, these could come swiftly.

I spoke with WACAP (my MOST MARVELOUS agency) last night, and they were cautious in prediciting when we might travel, as we don't know if the request for medical expedite will be honored at every level.

All along I kept thinking we would travel mid-May. I still feel this way. When the expedited paperwork started rolling in, I got hopeful that travel might occur this week--our spring break from school. Travel is close to impossible the last two weeks of April and the first week of May, as the Province our consulate is in holds a huge trade fair during this time and all hotels are booked a year in advance.

So I just opened my e-mail and I have my invite to my travel group conference call. My heart kicked into high gear. In the past, this call came  2-4 weeks prior to travel. The call time is set for April 18th.

My mom is thrilled we have a travel group--she doesn't want to travel to China alone. So this is an answered prayer. It's not that we tour while we're in country. In fact, other than provinial appointments to complete the adoption, we will rarely leave the hotel. The girls love the pool and Mama needs time to bond with her girl:) But my mom likes knowing there are other Americans with us should we need help.

I know God is never late. I know these next few weeks He is going to be growing me and I am packing my mental and emotional backbone with steel. The funds aren't all together yet. From the very beginning, this adoption has been a big leap of faith. But God has met me at every need. He has moved people to help, others who have stood in the gap in order to bring this little girl home. I know He won't leave us now.