Another Diagnosis

A difficult week with pediatric appointments, counseling appointments, and an ultrasound and bloodwork for Jasmine. 

I took Kayla in to pediatrics after seeing some very negative things at counseling. We wanted to rule out anything weird that might require medical intervention. Of course it's hard to tell. She is doing well in her new school. She went from the most demanding school to the lowest performance school. She now has all As and Bs and is doing well in band. Now she needs to do the hard work of facing issues and healing. And we and her counseling are all willing to work with her.

I took Jasmine in to peds because (she said I can share this) she got her periods at ten, but they have always been 8-9 weeks apart. But now they've stopped totally. The doctor ordered bloodwork to check hormone levels and such. I requested an ultrasound. The ultrasound was this morning, and it was not very fun for Jasmine because she had to "pee pee" so badly she was crying. But the lady was nice, and it was quick. 

The pediatrician called later and said Jasmine's blood work shows she had Congenital adrenal hyperplasia (CAH). This caused the early periods and her short height. It's unfortunate that no one screened for it early due to her ECC syndrome so that it could have been treated in time for her to grow more. Her growth plates are fused, so she is done growing. Anyone know anything about CAH?

We will be going to a pediatric endocrinologist to follow up and see what needs to be done.

The ultrasound did not show anything unusual.

I will post about the weekend later.

Shands/Orlando

 Jasmine was air lifted to Shands from a hospital in Georgia when she was born. After ten days of observation, she was returned to GA. Shortly after that, I met her and took her home as a foster child.

She has had a lot of surgeries there, and a couple in a hospital in Northern GA. But mostly Shands. 

Then our insurance (she has medicaid as part of her adoption, but we put her on Tricare) decided she didn't need to go to Shands. She should be seen at the University of Alabama. If Tricare had just denied her access to Shands, we could have used medicaid. But they didn't. So we had all her paperwork sent to U of A. They said they didn't want to work with her when she'd been with a different hospital for so long.

After 2+ years, we received a referral to Shands. So off to Shands we went this past Thursday. And as expected, she has one more surgery on both her lip and nose to go. These last ones take place after the child is full grown. And she is full grown at 4'9.5" We put it off until summer though.

We also discussed why her testing said she did not have EEC syndrome when she very obviously has that or a very similar syndrome. More advanced testing will be done before she decides whether or not to have birth children.

Since we were so close to Orlando and there was no school Friday (and there  isn't school Monday or Tuesday for two of my kids, Kayla has to go back Tuesday), we decided to go to Universal/Islands of Adventure on a special three day pass.

 Friday wasn't very busy in the parks and we walked right on to many of the rides, although there was a wait at the new Harry Potter ride. But we rode the old one twice in a row!

Butter "beer"

We bought Red Fish, Blue Fish shirts

Seuss Landing

 Saturday morning we went to Planet Fitness in Orlando before going back to Universal/Islands of Adventure

 Today the parks were very crowded. And there were lines for everything including the restrooms.

We have one day left on our pass so tomorrow (well, today really since it's past midnight) we'll go back for just a few hours before heading home.

She's a Freshman

Jasmine is now officially a high school student!

Before graduation

With friends

history teacher for three years

language arts teacher this year, but Jasmine also had her for third grade Sunday school

I matched her beads to her dress

Celebrating. We didn't go out because I'm taking her to NYC to celebrate! We've saved over three years for the trip. 

She got one more card identical to the one above, but it just came so I don't have her picture with it yet.

She is at day one of freshman band orientation. Unfortunately she is going to miss the next two days. I was told it was the first three days of summer vacation--M, T, W--so I scheduled us to fly out tomorrow (Thursday). But really orientation is W, Th & Fri.  She has two full weeks of band camp the last two weeks of July so that should make up for it! 

So now I have a high school freshman. This is the one I'm having the most trouble believing she's a freshman. 

And we found out this week she is at her full growth. Her growth plates have fused. She is 4'9" or 4'10". There was a discrepancy in measurements, but knowing now she's at full height I'm going to make sure to get an accurate height next time. 

I will try to post from New York, so hopefully the next post will be that Jasmine and I (and our cameras and lap top) have arrive safely in NYC. (Flying into Newark, taking bus to Penn Station Newark, train to Penn Station NYC and the #7 to the cheap hotel district!!)

What a Week!!!

This has been a crazy week. And we are only on Wednesday! It started last week. Rick's sister suddenly started having medical issues. They put her in the hospital, and no one could figure out what was wrong. Her body shut down, and she died late Monday night. 

I think deaths are hard when they are that sudden. No time to really say goodbye or to process things ahead of time like with a long  illness. And I think it's hard when parents have to bury a child. Whether they are 5 or 15 or almost 54. 

She left behind two adult children and two grandchildren. 

This is finals week for Jasmine, and since it's the last week of school, there is no way to make them up. She has eighth grade graduation/celebration tomorrow night. We also have EIGHT appointments between us this week!! So Rick had to drive up to Indiana alone. But once he's there, he'll be with family. Rick's daughter and her two children will be driving in. And Deb's two adult children and two grandchildren will be there plus Rick's parents.

I'm glad we were all able to have a good visit a couple of summers ago when we were up there. Rick was able to get time off work which was very unusual, but he'd been in that job a while and had vacation time built up. He's in a job now he's only had a few months, but he has three bereavement days.

He and his sister are two days less than a year apart.

At our wedding 1988

At our wedding 1988

At Ty's graduation in 2009

Ty's graduation 2009

July 2013

 I mentioned that we have eight appointments this week. Well, I can't say that we received good news at any of them so far.

Kaleb had an eye appointment Monday. His left eye has always been pretty good, while he has had only a little vision in his right eye. We found out that his left eye has gotten much worse, and he needs bifocals for that eye. His right eye is turning outward, and the specialist wants to cut the muscles and reattach them to have the eye more stable.

On Tuesday Kaleb has his ADHD appointment, and we found out he has lost weight on the meds. The dosage also isn't high enough, but she can't increase it due to the weight loss. So we switched meds, and she also added one for impulsiveness. We found out he has three different skin issues so we have creams and such for that.

Jasmine started with a new doctor for her ADHD meds and that appointment was just routine. Then she had a physical. She has "flatlined" on her growth chart for almost two years. I've noticed that too. It could mean she is done growing at 14 at only 4'9.5" but we hope not!!!! They sent us to X ray to get a bone scan to see if  her growth plates are sealed yet or not. If they are, there is nothing to be done.

The pediatrician also put in a referral for Shands for the third time. They keep referring her to a local plastic surgeon but I don't want anyone but the cranio facial team she's been with since birth touching her lip or neck. I think she's going to need repairs, but not if  her team can't do it. She also got a referral to ENT to find out why her ears won't equalize at depths below 15 feet underwater.

Tomorrow Kayla has counseling. We have had a time of it and that's about all I'm going to say on here. She will be going through the same testing with the same doctor Kaleb saw a while back. But for way different reasons. He is delayed and can be stubborn and pouty, but he gets over it. He is not mean or aggressive. He has not deliberately hurt anyone for years.

Friday morning I have a urology appointment to deal with my IC, and I definitely won't bless you with those details. But at least I've found a femal urologist willing to try and find some answers.

The kids are out of school at noon Friday, and we have several activities planned for the weekend.

Next time I will post something more cheery. We did have a very interesting weekend this past weekend.

Kaleb's Eye

No one knew Kaleb had an eye problem until the school tried to get him to cover his left eye and read letters with the right. Why this was never done at his physicals I don't know. I assumed it had been. But it must not have been or they would have found this as soon as he arrived here from Haiti. When the school discovered it, we took him to our eye Dr. The problem was serious enough that he was referred to a specialist who is only in town one day every month. 

Kaleb has very little vision in his right eye. He has been patching his left eye for two years (at least. I can't really remember when this all started). But before we knew about his eyes, his left eye was just doing all the work, but he could see okay.

I took him for his appointment on Monday. At that time the Dr. said something she's not mentioned before that is going to change things for Kaleb. "No contact sports. No sports with a ball. Stick with running and swimming for him." 

First team sport spring 2010

Fall 2012

That kind of threw me because she's never said that before. Maybe she doesn't realize that organized sports start before you are even out of pullups now.

I was getting ready to sign him up for winter basketball. He's played two years with a year off between.

winter 2010/2011

2012/2013

I asked about protective goggles. She said no. The goggles could still get hit and it would still impact his eye. She said if he is hit in or near the eye, it is so fragile that he'd probably lose all sight in the eye. Wow.

He enjoys being on a team, but thankfully he's not a gifted athlete. He tries--when he's focused--but he's not the one out front scoring points. 

He is a runner, of course, but he won't be on a team until at least sixth grade. I think we are going to look into gymnastics. We are going to try to protect the eye, but he could just as easily get hit in the  eye in PE or on playground. He could walk into a door or get hit by something random. He could get a foot or elbow in the face at the pool. So we are not going to go overboard about it. 

Still, it does change things. But we will make it work. We always do.

Quiet Week

There hasn't been much to write about this week. It's FCAT testing. Jasmine is the only one taking FCATs this year. She did both parts of the math test Monday and then does reading on Thursday and Friday. Hopefully she will do great on the reading. Probably not on the math with having to test at the 6th grade level when she's struggling with 5th grade math. I'm okay with that. It's just part of life for Jasmine, and we're both very realistic about it. She knows she needs to do the best she can and then not worry about it.

Friday and Saturday is the Extraordinary Women's Convention in Pensacola that Jessica and I go to each year.  However, she failed to put those dates in the time off book and is scheduled for a double on Saturday. She can't get anyone to work it. She forgot once before but got someone to cover all but her last shift Saturday so we left the convention early. This year I am taking Jasmine in her place. She's a little young for it, but there are always home school girls there so she won't be the only young one.
UPDATE: One of the people who wasn't willing to take Jessica's shifts Saturday needed a last minute replacement tonight. Jessica was like, "I'm not feeling very generous about taking shifts when no one will help me out Saturday." The guy was suddenly available to take her shifts Saturday, so she will be going with me after all. Tyler and Jasmine will be going out to lunch and to The Croods Saturday while I'm gone. (She was very disappointed not to be going, and I wouldn't have told her she could except that everyone had turned Jessica down for shifts.)

This year in addition to the regular speakers, Karen Kingsbury, Pam Tebow (Tim Tebow's mom) and comedian Tim Hawkins will be there. Seriously, I was not going to go again if Chonda Pierce was there again. She was horribly inappropriate last time.

There is always a theme for these conventions. This year the theme is "Enduing Love." I don't remember what it was when she was there (two years ago I think). But she talked mostly about sex over 50. At a Christian Women's Convention. With probably 100 preteen/young teen girls there. And when one of the worship leaders signalled her she was out of line, she made fun of him from the stage. So not impressed. But she ended by singing a nice Christian song, and that was supposed to make up for the crap she'd talked about. If she was doing comedy in a bar, it might have been funny. It  was just horribly inappropriate for the situation.

Jessica and I went to Firehouse Subs after her dentist appointment yesterday.  Not good news for one of her molars unfortunately. She has her first root canal in three weeks. (Waiting until after dive class is over) At least it's so much more humane now than 20 years ago. Those were truly awful!

Adam had  a great time on the senior trip last weekend. Today the track team drives to Jacksonville (about 5 hours) to compete in regionals tomorrow. So he missed two fulls day of school last week for districts and senior trip, and he missed two this week for regionals. I sure hope he's keeping up on his school work!


Rick's foot is still healing, and Max's paw is still healing. Max was supposed to stay in for 14 days, but he got very upset this morning so went out. He's used to going out at night, and he's been in for 5 nights. He'll probably show back up later, and we'll see if he wants to stay in a couple more days.

Jaden is very good about using a litter box, but Max is not. He prefers our bathroom rugs! Blah.

Tyler is on week two of his job. It's been quite an adjustment for him to go from playing on his iPad a majority of the day (as well as helping around the house and with the twins' homework) to working 3-4 ten hour days. It has shifted our morning a bit earlier. The first group out now (driven by Rick) includes Tyler, Jessica twice this week, Adam and Jasmine need to be out the door by 6:00. I walk the twins down to their bus at 6:18. Then all but Adam need picked back up. He rides home from track with a neighbor.

Kaleb is still struggling with behaviors. He went from being on green for two weeks to now being on red every single day for two weeks. Kayla is doing pretty well at school but has gotten into the habit of ugly talk on the bus. Always something new to deal 
with. : ) There are lots of exciting things coming up, so I'm hoping for a turn around in behaviors. Sometimes they get stuck in a cycle of misbehavior and it takes a lot of consistency and patience (which I was seriously lacking this morning!) to get them turned back around. 

Have a great rest of the week. I probably won't post again until after convention.

And one more thing I keep forgetting. Below is the cover for my book coming out in July. Remember that I have little to no say about the covers. When the showed it to me, I asked if we could lose the chin and add a second child who is not white. But the sales and marketing people vetoed me. I am okay with that. They are "adding some diversity" to the inside for me.

The Weekend

This weekend was beautiful--at least Friday and Saturday were. It rained Sunday.

The kids spent more time on the trampoline. Jasmine and Kayla hadn't gone out to play yet when I posted the pictures in the last post.

Wipe Out

Four of the kids ran in a 5K on Saturday.  Kaleb came in at 30:08. That's his fastest yet.  He was the only boy in 14 and under.

Tyler was in only a couple of minutes ahead of Kaleb. (I don't know why my photos didn't post in the right order) He took first in his age group. There were several guys in his age group running together, but they were a couple of minutes behind him.

Jasmine had some stomach issues with this race, but she finished. There were only two girls in 14 & under so she placed anyway.

Jessica finished after the boys and ahead of Jasmine. She got 2nd in her age group coming in ahead of the next one by several minutes.

They were all glad to have finished and have it behind them. The next race they are running is not until May 4.

Sometimes it's hard to know how much to put on a blog. You want to give a realistic picture of your life, but protect your family's privacy at the same time. That being said, some of you have asked why one of the children isn't in sport or running at that time. And I'll just say it's due to extremely poor behavior and choices that include stealing, lying and deliberately hurting other children. Serious enough that one child had to be taken to the emergency room and had some serious internal damage. There is no remorse and the behavior repeats itself so we are remaining in counseling and avoiding situations that set her up to hurt other children and that includes all competitive activities. It is just not right to disable a child to the emergency room in order to win a game.

This is the last week before spring break for the younger kids. Jessica's was last week. We don't have any big plans, just some things we plan to do at home or locally.

Adam has both a track meet and the soccer awards banquet today. It's kind of a mess because five of the track kids are supposed to be at the banquet, but they probably will not be done with the meet yet. If it rains, that may solve the problem. Otherwise they'll have to head to the banquet across town after their last events (and they probably won't smell all that good).

Rick still has another week and a half until they take the bandage off his foot and he can drive again. In the meantime, everyone is pulling together to get everyone where they need to go each day. It helps to have Tyler and Jessica as drivers.

Guess that's all from our house for now.