Princess Bruiser

Daddy has been calling Abigail Princess Bruiser lately. She just can't get through a week without some injury, and last week's was a doozy. She was climbing the play structure by using a stretchy jump rope that was tied to the top. It came undone, and the wooden handle smacked her in the face. Though you can't see it very well in the picture, it was very swollen and turned a very pretty shade of purple as well as giving her two black eyes before finally healing up this week.


We had an appointment with the pediatrician the next day, and when he asked her how it happened Abby said very seriously, "Let me tell you the whole story!" She then proceeded to start her story a year ago when Granpa and Daddy built the play structure! Thankfully, there were no broken facial bones, just a bruises and sore spots.

Eye Doctor

Abby had her checkup with the eye doctor today, and I'm happy to report that she has perfect vision. Well, she's a little farsighted, but apparently that's normal for children (Ryan is too).

The ophthalmologist also looked at her red bump under her eye and agreed with Ryan's doctor that it is a chalazion. She told me I can finally stop the hot compresses as they don't do much good at this stage (I kind of figured that out by now), and she gave me some ointment to put on twice a day. It will still take a while to completely resolve, but hopefully in a couple months it will be gone.

But just when I thought it was all good news, she had me look through the microscope at Abby's other eyelid. She has another plugged gland! Though it's not swollen or red yet, we now have to put hot compresses on that eye in hopes that it will prevent a full blown chalazion like we had last time.

Chalazion

While we were at Ryan's eye surgeon, I took the chance to ask her about Abby's stye that still hasn't gone away. Dr. Goodman said that it is more likely what's called a chalazion, and not a stye, though they are similar. Whereas a stye is red, sore lump near the edge of the eyelid caused by an infected eyelash follicle, a chalazion tends to develop farther from the edge of the eyelid and is not caused by infection from bacteria but from a gland becoming blogged with oil secretions.

The treatment? Same thing we've been doing for months: warm compresses four to five times a day. It really hasn't seemed to be helping, so I've gone in spurts where I do it for a week and then give up. However, Abby has an eye exam next month with her opthalmologist, so I will keep doing it until the visit and see what the doctor says then. Ryan's surgeon said there is an ointment that can be prescribed for stubborn chalazia, so perhaps we will get some of that next month.

It's Gone

I was pretty sure Abigail was going to lose her fingernail when she injured it last week, and sure enough, we had to clip it off because it was only hanging on by a small piece. Isn't it lovely?

Oops!

We had an "interruption" last night of the gruesome kind, a trip to urgent care. Ryan and Abby were helping me get dinner ready and after Abby helped mix the rub for the pork tenderloin she wanted to help Ryan peel potatoes.


After she was about halfway done with the potato, she sliced into her finger and through her fingernail. I rinsed it and put pressure on it but it took a good 20 to 25 minutes to stop the bleeding, and then it would start again every time she bent her finger. By that time Daddy had arrived home, so we turned off the oven and drove to urgent care.


As we suspected they really didn't recommend doing much but to just "let nature take its course." They glued a bandage on to keep it from opening up every time she used her finger and put a small guard on to protect it.


As usual she was a wonderful patient, which I am so thankful for. When she got her new bike for her birthday, I had wondered if we'd end making a trip to urgent care from a bad fall, but I didn't think we'd end up there from a willingness to help make dinner!

Worse Before Better

Abby's stye got absolutely huge and ugly before it finally drained and began healing. We are still treating it with hot compresses and some prescription drops, and it looks much better than it did in this picture. Hopefully I can post a picture soon of it completely well!

Eye Problems

When I told her I wanted to take a picture of her eye,
this is the look she gave me. Silly kid!
Abby told me last week that her eye was hurting, but when I looked at it I didn't see anything significant. It looked like she had maybe scratched the inside of the lower lid. This weekend, however, it became apparent she had something going on because there was a lump under the lower lid. So I took her to the pediatrician on Tuesday to make sure it wasn't anything serious, and it's not, just a stye. We're putting warm compresses on it, rinsing with boric acid and waiting for it to go away. She really hasn't complained about it since the first day, but it's starting to look pretty terrible.

Difficult Decision

We have been a little puzzled by some changes in Abby recently. Ever since the beginning of August our lives have been pretty busy with camping, a trip to Seattle, and a long trip to California, and we have not done any of her therapy program (with the exception of stopping the self-stimming behavior). Yet in that time she has progressed back to the point or even better than she was a year ago when all this regression started (with the exception of not being potty trained still). She still has a lot of "issues," but we just aren't seeing the same disturbing behavior that we were back at the beginning of the year.

So we're wondering if the therapy has been helping all these months and she's now rapidly reaping the benefit of that, or did it just go away, or is she just maturing and growing up and out of some of this stuff? During the time we were doing therapy we didn't see this much progress, so now that we've stopped and are seeing a return to her "normal" self, we are questioning whether we need to continue the therapy.

After some prayer and discussion with hubby, we have made the hard decision to cancel her next appointment with the neurodevelopmental specialist. I hope we don't undo all we've done, but at this point we don't see the need to put Abby--and me--through the program. She had really begun to hate doing her program every day, and when she found out we weren't doing it anymore, she was so excited!

Another factor in our decision is that we have two appointments with a specialist recommended by our pediatrician back in June. We couldn't get in for five months, but we will see him this month. I am a bit skeptical about these visits, but I'm willing to listen and hear what they have to offer. Afterall, we did ask our ped for advice, and it would probably be a good idea to follow through with his advice instead of just dismissing it without checking it out, huh?

All this to say, please pray for wisdom and guidance for us. I am truly shocked and dismayed that there really are no specialists in the area of FASD, and no one really seems to know what to do. Most treatment is parent driven and I sometimes feel like an explorer lost in a world completely unfamiliar to me yet refusing to believe that medication and/or doing nothing are my only options. If that turns out to be the case after all my searching, so be it. But for now, I am not going to be content with that. Abigail is an incredibly bright (and beautiful, I might add) child who just needs help in reaching her potential!

Lord, help me help her, please.

Patterns

One of the activities we are doing with Abby is a series of patterns designed to help organize the brain. Anything that uses the limbs and crosses over the body or uses the limbs on opposite sides of the body is good for this, such as crawling. This one is called Tuck in/Blast out, and the first couple of days she did this, it was very difficult for her, but she's got the hang of it now. We do this 50 times in a row and then three other patterns 50 times each right after. It wears her out!

"Doing School"

Though at first I was pretty overwhelmed with everything I was going to have to do with Abigail on her new program, after breaking it down into smaller chunks, I felt much better. I made up index cards with about 15 minutes worth of activities on each one, and I have started working through them one card at a time throughout the day. Daddy is also helping with a card or two in the evenings. The last few days I have been telling her we're going to do school like Ryan, and she thinks that great! So while he is learning his math facts and/or writing, Abby is learning how to retrain her brain! This has been working great so far and since Ryan can do his math and writing without much assistance from me, this doesn't feel like I'm adding too much to our morning since I used to spend that time with Abby reading stories or something anyway.

Our cute little "bug!"
Some of the time doesn't involve direct one-on-one time with me, like wearing her pinhole glasses. She has to wear these for 15 minutes twice a day while watching DVD. Marilee said most kids will want to take them off, but Abby has been very good about leaving them on thankfully. These pinhole glasses are supposed to force her to use her central vision since you can't see out of them peripherally. Once she is using her central vision normally, she should stop doing some of the self-stimulating behaviors such as shaking things (anything and everything) beside her face, dangling strings, etc.


Listening to Mozart...which she LOVES!
I have been starting out slowly on the program and adding more each day. Tomorrow we should be almost up to full program with the exception of a few things I can't do until I get the supplies (such as the nutritional supplements). I'll also try to post some video of some of the fun things we are doing with Abby. I'm so grateful she likes just about everything we do!

Neurodevelopmental Evaluation

We had a very long but fruitful weekend. We left the house a few minutes before 5:00am on Friday and drove about 12 hours to Modesto, California. The kids were amazingly good and really enjoyed our surprise of a dual screen DVD player for the car! We only have one set of child-size headphones, so the kids were trading off and on with those while the other one was left to keep pushing them up on their ears. I tried to improvise with a pair of socks (which had us all cracking up every time we looked at her), but it didn't work too well. Another set of kid-size headphones is definitely on the list to buy!


The kids were thrilled to see Gramie was already at the hotel waiting for us. As usual she had brought all kinds of goodies for the kids (and for Mommy and Daddy). She took us out to a nice dinner that night, and then we went back to the hotel for baths and bedtime. Ryan fell asleep fairly quickly, but Abby didn't get to sleep until after 11:00! She was WAY overstimulated, and it takes her a long time to settle down when she's like that.


We got up and took Abby to her appointment at 8:00am on Saturday. Abby warmed up to Marilee very quickly and was very cooperative during the whole evaluation. As we expected, she is hyposensitive in her tactile, proprioreceptive and vestibular senses. We also learned that she uses her peripheral vision much more than her central vision (this doesn't have to do with 20/20 sight but with how the brain functions in conjunction with the eyes. She has very good vision.), which was a bit surprising and cleared up a few things for me, namely, that she doesn't make eye contact even when I am holding her face in my hand and trying to force her to look me in the eye!



We were then asked to wait about 30 minutes while she put together our INP (individual neurodevelopment plan). We were given about 4 1/2 hours of activities to do five days a week (some are seven days) with her. It was also recommended that we have an assesment done and get her on some mineral and electrolyte supplements to help with her metabolic issues. We got back to the hotel at about noon, so the whole evaluation took about four hours.

We were a bit overwhelmed, but after reading through some of the handouts and watching some of the videos provided, we felt much better. It was so wonderful to have my mom there to watch Ryan during the eval and to play with both of them while we processed the information and planned out how we would implement everything!

After lunch we went to the Great Valley Museum that turned out to be much better than it looked on the outside and was definitely worth the $3 per family admission price! The kids had a great time looking at all the taxidermied animals and playing with the hands-on stuff for the kids, as well as seeing some real snakes, frogs, tarantulas, etc.


We had another yummy dinner, and headed back to the hotel for bed. Abby again had trouble getting to sleep, but Mommy and Daddy had no trouble whatsoever. After breakfast we thanked Gramie, said goodbye to her and left for home at about 9:30am. It was a VERY long drive home. It took 14 hours due to needing to stop more and to a big mess we needed to stop and clean up in the van (can you guess who made the mess?), so we pulled into the garage at about 11:30pm and crashed into bed. Abby didn't even fall asleep until after we left Salem (which is only an hour from home), and Ryan didn't fall asleep till Scappoose (10 minutes from home)!

Barely Noticeable

Our pretty girl!

I was bathing the kids yesterday, and I thought I'd get a couple of pictures of how their respective wounds are healing. Abby's scar is in a difficult place to get a good picture of, but it looks really great. It's still a little pink, but because of its location, you can barely see it. She's bumped it several times since the sutures came out, but so far it's held together well!

Whew!

We took Abigail to her pediatrician yesterday for some follow-up blood work. He examined her again, and then they drew more blood. She was really brave again, though they took it from her hand this time and I know that hurts more than the arm. They neglected to run the hemoglobin A1C that the endocrinologist had asked for the last time, so they ran it this time along with the other tests.

I just got the call from the doctor that all her tests came back normal or near-normal, as we had hoped and prayed! Her sed rate had been way over 100, and it is now 22. Normal for her age is 20. It's a little high, but obviously coming down. Her CRP or C-reactive protein level (I have no idea what that is except it's a marker for inflammation) had been "wildly high," and it is now normal too! Lastly, her A1C came back within the normal range. This test shows how high her blood sugar has been over a three- or four-month period of time. Normal range is 6 and under, and hers was 5.8. It's on the high end of normal, but as our ped said, "normal is normal."

So she has a clean bill of health, and we're grateful this is over! We will be slightly on guard for any symptoms of diabetes, but it looks like it was a side effect of the stress her body was under due to whatever illness she had. Thanks so very, very much for all ther prayers! We are so blessed to have a praying support group.

She's Back

Well, it seems that Abigail is feeling pretty good again. She got some firm discipline today for the first time in almost three weeks! I'm so relieved she's feeling better, but, truly, I liked her not getting into something every time I turned around. It's amazing how I could forget in just three short weeks how mischievious and impulsive she is! We're supposed to go back to the doctor on Monday, and now I think I can pretty much tell him she's her old self again!

Still Improving

Abigail went all weekend without a fever, and she seems to be feeling better each day. Her appetite is not back to normal nor is her activity level, but every day she seems to be eating and playing a little more. She still looks pale to me and has dark circles, but she hasn't been outside to play for over two weeks, so perhaps that has something to do with it.

Our pediatrician wanted an update on her Monday morning, so I have a call in to him. I am hoping we can cancel our rheumatologist appointment tomorrow since it seems to be superfluous, but when I asked last week if they wanted to see her even if her fever went away, they at that time said it would be a good idea to still see her in view of her sed rate.

I am so grateful for all of you I know and don't know who have been bringing us before the throne of grace! It has brought me so much comfort knowing how many of you are praying for Abby and for us.

Update: Our Pediatrician just called and said we can cancel our appointment with the rheumatologist! He wants to see her next week to double check her and possibly draw more blood to make sure her sed rate is indeed going down.

No Fever Again This Morning

Yeah! Abigail woke up without a fever again this morning. I'm so relieved that she's showing signs of improvement. She still doesn't look or act completely well yet though, and the doctors are pretty much in agreement that whatever she had or has was or is not a virus. I talked to the infectious disease doc this morning, and Ed talked to our pediatrician this morning. Her sedimentation rate is really high, and so apparently that means she has inflammation somewhere in her body. They said she can still have inflammation even though she has no fever, so they're pleased she seems to be improving but they are very guarded still. Our pediatrician still wants us to see the rheumatologist, and they may draw more blood again. The second sed rate they did last Monday (was that really just the beginning of this week?!) was higher than the first one they did the Wednesday before, so they don't want to dismiss this just because she doesn't have a persistent fever anymore.

Frankly, I am guarded too. Although it's a HUGE relief to me that she's not feverish 24/7, she just isn't her normal self. She did still get a fever yesterday afternoon, so I'm keeping a close eye on her again today to see if she gets another one. I feel so blessed to have so many of you prayng for her and for us. Since we're still getting settled in to our new church, we don't have a lot of friends or people whom we feel like we can call to pray for us, so I'm grateful for the internet and email (and of course the old fashioned phone) that brings all of you closer to us.

Some Good News

I didn't post this last night because I was kind of overwhelmed, but our pediatrician called again yesterday evening to say he had consulted with a hemotologist/oncologist and that she wanted to see Abby before we went to the rheumatologist next Tuesday. They were considering doing a bone scan which would show any "activity" in her bones, either infection or a tumor or an injury.

The good news is this morning when she woke up she did NOT have a fever! We were very excited that maybe we are seeing the beginning of the end of whatever she has. We went ahead and went to the appointment though. Somehow we ended up consulting with an infectious disease doctor in the oncologist's office (I am still a little confused as to how that happened), and he gave her a thorough exam, asked a lot of questions, and consulted with the hemotologist/oncologist for us. The best news I've heard since all of this is that though we can't know 100 percent, nothing in any of her blood work shows any signs of leukemia or any malignancies. The oncologist said he saw no reason to do the bone scan, and so Abby gave another urine sample and we were done at that office after being there for two hours.

The infectious disease doc said he wants to be sure she is tested for toxoplasmosis even though she hasn't had any contact with a cat. Other than that, we're just supposed to contact him if any other symptoms appear or her condition worsens.

I was disappointed, though not really surprised, when her fever came back at 3:00 this afternoon. All day she still didn't seem to be feeling well, so I half expected her to become feverish again. I am so grateful for acetametaphin and ibuprofen. At least she can get relief from the aches and things associated with the high fevers. That's all the news for now. We continue to wait and pray, and we're so thankful for everyone's prayers.

New Specialist

Abby can now add rheumatologist to her ever-growing list of specialists. Our pediatrician called last night with some of the results from Abby's latest blood work. There's nothing new really, but her sed rate and white count were both higher than the first time they tested. He says everything is pointing to the fact that she has some inflammation in her body somewhere. There are still some blood tests waiting to come back, but he referred us to a rheumatologist for further diagnostics and/or treatment.

Their office has been unusually busy but we got an appointment for next Tuesday. He said he wants to see her even if her fever goes away by then (Lord willing). We know right where his office is...the same place her other specialists are, right at the hospital where she was born, Legacy Emanuel in Portland. She already has a chart there which will smooth things a little bit (except for the fact that they will undoubtedly have our address wrong. Though we've changed it dozens of times it always goes back to her birthmother's address. Somehow the billing department never gets it wrong!).

She is holding steady, and her fevers stay much lower now that we're dosing her meds every four hours. She slept through the night again last night, and she had a 103.5 fever this morning. She wanted to watch Cinderella, so I put her in our room so it wouldn't distract Ryan doing his school work. I was checking on her periodically, and after about 45 minutes she was sound asleep and slept for two hours. This is the third day in a row she's taken an early morning nap.

Nothing Much to Add

Unless there's progress or news or worsening of Abby's condition, I'm not going to post any more daily reports. She's unchanged again today, though we did have the thrill of sleeping through the night last night for the first time in 10 days! She was quite feverish when I checked on her at 6:30 this morning (the fears of those newborn days are coming back to me..."Why didn't she wake me up last night?!"), and she fell asleep on my chair at 9:00 this morning (Poor girl, I was watching C-Span at the UN General Assembly meeting...Kofi Annan will put the most alert person to sleep! :D) and is still napping.

Thanks again for all who have been praying for her (and us), and we appreciate continued prayers on her behalf. The Lord is gracious and keeps giving me peace...and He's good ALL the time.

More Tests

Abby saw her pediatrician again today (twice actually), and she still has no other symptoms or findings than the fever. They drew more blood and got another urine sample, but it will be at least a couple of days before we know the results of the tests. I'm not sure what all they tested for, but I think they're looking more toward autoimmune or rheumatoid type things. He said the longer the fever goes on the more serious the diagnosis, though he has seen a few viruses run for 14 days. He is still consulting with the endocrinologist and the infectious disease doctor and now a rheumatologist.

The rheumatologist said he won't even see a child until they've had a fever for six weeks! (We're on day 10.) The infectious disease doctor didn't really give any ideas. The endocrinologist told me today that we can just test Abby's blood sugar once a day (in the morning before breakfast) and if it stays below 105 for a week we can discontinue monitoring. Though since the ped was drawing blood anyway, he did ask for an A1C test to be done which if it's positive will indicate that she's had a blood sugar issue for longer than just this illness.

She was not happy to have the blood drawn again, but as usual, she was cooperative and brave. I think it scares her more than hurts her actually. I'm sure she's tired of being poked and prodded, but she doesn't complain. Her appetite has been better the last couple of days, which makes me feel better. The doctor said she's not likely to be contagious and we should just let her do whatever she feels up to doing, including playing outside if she wants (and if the rain stops). We will continue to alternate the acetametaphin and ibuprofen every four hours to keep her comfortable, and there's nothing else we can do but wait and pray.