Tuesday, November 30, 2010

Is No News Good news?

Tomorrow it will have been three weeks since they took blood from Ahren to test for Muscular Dystrophies (there are different kinds) and another degenerative terminal disease. We still do not know the results. We do know that the results were back before the Thanksgiving week, but had to wait for the doctor to look at them and call us.

I figured that no one would be working all last week so I tried extra hard to be patient. Then first thing yesterday I called and left a message. Then today I left two messages and tried to backdoor a call to their office by going through a supervisor. Got the same voice mail.

So is no news good news? Or will I die from anxiety long before they ever call us???????

Saturday, November 27, 2010

How to keep busy

Long holiday weekends mean rest and relaxation.....NOT! As a child I remember being horribly bored on long holiday weekends. As a young adult I remember whirling in social engagements on those weekends. As a newly married person there were lots of family obligations, visits to Auntie Sue and Cousin Flora and people I did not know but knew me. When I was a young parent of one or two, the family obligations continued, only with small persons in tow. Small persons to dress up and show off and pray behaved in the most adorable fashion. (Which they mostly did)

Today, in the here and now, long weekends mean extra hours to try and accomplish important home-oriented projects. Chris and I set our sights on a big re-organization project for this weekend. This works in two ways for us. We accomplish something positive and we do NOT think about things NEGATIVE. (Or so the story goes...)

Off of the master bedroom in our house, which we designed, is a 'bonus' room. It has a window and doorway and ceiling fan and lights. It is the size of a smallish bedroom, but long and rectangular. Our plans for the room were to use it as a place for a nursery, then exercise room or library/sitting room. Instead, it became our large storage closet! Shocked? Not me. We moved in a super-hurry and there was so much we just didn't have time to really sort out or find a home for. Here in south Texas, you cannot put keepsakes like photos and such into the attic or garage because the heat will destroy them. They need to be in AC controlled space. Then there were all the things I just didn't know what to do with. And all my knitting and sewing stuff. And left-over home decorations. Etc, etc, etc. Hence the , ummmm, disaster area!

This is what I tackled this weekend. At the same time I had envisioned a mud-room - back entry way bench, storage system that I had convinced Chris we needed. He has been working all weekend on that. What was I thinking? Both of us busy and 3 boys bored out of their gourds? Chris and I have both made progress but our house looks like a tornado hit it, followed by a marauding band of wild monkeys and a small circus. OMG! I want to sleep in the barn it is so bad. In the end, I think it will be worth it, but I don't know how many brain cells and gray hairs this is going to cost me. Too many is probably the answer.

Please send help. Preferably chocolate and alcohol. And maybe a tranquilizer dart gun......

Oh, by the way, small boys and young dogs are having a contest in my house. Who can leave the most bodily waste products for me to find. Right now it is even. Lucky me.

Thursday, November 25, 2010

Something You Love

by Ashley, age 15

My Family: They make me the luckiest girl on earth. When everything else goes wrong and I want to quit, I still have them, the best family ever.

Mom, thank you. Thank you for putting us before you, thank you for teaching me lessons, thank you for always listening to me. Thank you for never judging me. Thank you for being the best. i love you. We all love you.

Dad, thank you for being my best friend. Thank you for teaching me everything I know. Thank you for working so hard to get me whatever my heart desires. Thank you for being my shoulder to cry on and telling me it's going to be ok. Thank you for putting me before yourself. I love you more than life itself.

Kaytee, you are the best big sister. You make me laugh all the time. Thank you for always listening and never judging me. Thank you for teaching me what really matters in life. Thank you for leading by example and teaching me what a great person should be. I love you.

Levi, you are what me and Kaytee wanted for many many years. When you were born it was amazing. You brought joy to everyone. You are so young yet so optimistic. you make every situation worth going through. Knowing that you look up to me makes me a better person. I love you so much lil p.

Ahren, you are mine. You are my mini-me. We may have different birth parents but we are each other. You came to us when we needed you most. We fought three years for you to come from Guatemala. We have the same birthday, 11 years and 6 minutes apart. You are such a sweet little boy who is always smiling. Ahren, you will win this battle. I will do whatever I can to save you. Do not let this disease win. You belong here with us. God, we fought so hard for this little boy and cried so many tears. Do not take him away from us. I'm not sure we could pull through it. I will love you now and forever Ahren.

Seth, you are our newest addition. Your story is truly sad but you're with your real family now. Just know that we will never abandon you and we will all love you forever.

Peri Brynn, you are our baby. You are ours even if you are still a thousand miles away in Guatemala. We will keep fighting for you. No matter what. I can honestly say we will never give up. When adoption opens up again you will finally be home with your real family. Never give up my little angel, we love you dearly.

Wednesday, November 24, 2010


There are some things that still weigh very heavy on my heart. We did NOT get a call from the neuro-muscular specialist with the test results. We have to continue to try and be patient. (Well, try at least. I have left numerous phone messages. I think he might be out of the office the whole week.) We need to finalize Seth's adoption and the only thing holding it back are my laziness and the attorney on the case. He is already ours in our hearts but we do need to make it legal. Then there is the issue of Seth's possible 'mood disorder'. If you read between the lines that means bi-polar. The newest ADHD meds are only slightly effective. For the record, Ritalin worked pretty well but he gagged and threw up on it. Plus it was not covered by insurance so we had to foot the rather large bill. Then we tried Daytrana, a patch. It seemed to work at first but quickly lost effectiveness. Now we are trying Adderal XR and adding Risperdal to the mix soon. This poor child needs a break. A break from the anxiety and anger. He deserves to be happy and free.

And yet, we have so very much to be thankful for. We are so incredibly lucky. So blessed. Tomorrow I am going to post something Ashley wrote. It made me cry big fat happy tears when I read it. Sometimes my children show me how big and wonderful our world is, and I can do nothing but rejoice and be humbled. How in the world did I ever become the mother of such wonderful people?

Monday, November 22, 2010


The latest news we have on Ahren's tests is that I got in touch with the nurse and she said the results were back but the doctor needed to look at them and call us. With this being a short holiday week, what do you think the odds are we will hear before Thursday? sigh...

Seth is on his third ADHD medication. The first one was changed because he kept choking trying to swallow the capsule and throwing up. The second was a patch and it seemed to work somewhat at first but quickly lost all efficacy. Now we are on a third one, a very small capsule that I put in caramel sauce and he swallows. So far it doesn't seem to work at all but it has been only 5 days. All of us, the therapist, the physician and myself, think there is more to what is going on. He has a very high anxiety level (the shredding of food) has very low lows (screams and hurts himself) and very high highs (can laugh for 30 minutes straight in a high pitched cackle for no reason) and very little self control. We will be adding another mood stabilizer med in a couple of weeks to see if it helps. The one thing I know for sure is that none of the meds has slowed down his appetite or growth (common side affects). He is up to 41 pounds and just a hair under 43 inches tall. He has gone from a 2T to a 5T in pants. Poor baby tells me his legs hurt and I believe him!

Remember the puppy I mentioned that Kaytee's boyfriend got for her? Well at first they kept her at his apartment, but surprise! He wasn't supposed to have a dog and got busted. So he dropped her off at Kaytee's apartment, but she can't have a puppy either. Anyone want to guess where this puppy lives now? Meet Aspen, the very talented go-cart riding puppy.
Seth, have you been picking your nose?
No Mom.
Meet Jingles, our very own elf who watches over our kids and reports nightly back to Santa. He had to come early this year because of some very poor behavior choices on the part of three boys. (Yes, Levi does get in trouble too!) What this poor little guy sees must be very traumatizing. Just look at those crazy eyes!
Small boy, small dog.
Big boy, big dog.
Chris was off hunting this weekend so we decided to get busy. Lots of little hands for helping.
Lots and lots of lights for hanging.
A sweet angel to top it off.
We are definitely in the Christmas spirit. You should have heard all the questions about Jesus. Or as they always call him, Baby Jesus. I did my best to answer them all but ended up having to admit ignorance on some. Does anyone really know if Baby Jesus was allergic to hay?
Buster thinks Rudolph is just fine the way he is, nose and all.

Friday, November 19, 2010

Dr. Phil and RAD

Did anyone catch this week's Dr. Phil episode where the mother of an adopted son asked for help because she was struggling to parent the child? On the surface of the show it was cut and dried. She was a horribly abusive mother. She put hot sauce in her son's mouth for lieing. She punished him by making him take a cold shower. She had tried everything she could think of and nothing worked.

She was the one who sent the tape to Dr. Phil. She knew full well that she would be vilified as a monster but she was desperate for help. She was willing to face the judgement of Dr. Phil and the audience to get help.

Deeper in the story it is revealed that the child is thought to have RAD. This confuses her because his twin brother does not show any of the oppositional behavior. Instead the twin is timid, very quiet and seeks constant approval. He is thought to be the 'good' twin, never stepping one toe out of line.

They talk to the father and he is very detached. Apparently cold showers worked well in the military for discipline so it's a good idea. Besides, the kids are his wife's responsibility. He shows no compassion for his wife and the difficulties she is trying to deal with, and no sadness for his son.

The family apparently grew rapidly, and the addition of the twins upset the balance. The one little boy has become the pariah, the trouble-maker, the focus of discipline. Everything that is not working boils down to him. He is seven.

So what do I see? I see two little boys with different versions of RAD. One oppositional and one super-compliant. Both traumatized. I see a mother un-prepared for the issues her sons face. A mother with NO support system in place. An uneducated mother who had the best of intentions and no healthy dose of reality. I see a child who is in serious fight-or-flight mode and constantly scared to death. A child who is doing his very best to survive and escape before he is once again abandoned.

So what do I know that Dr. Phil doesn't? I know that parenting a child with RAD is a 24/7/365 job that is more challenging, more exhausting and more demanding than anything I have ever experienced. It is not intuitive. There are no owners manuals. No directions. No maps. Just when you figure out something that works, the game changes. It isn't two steps forward and one step back, it is more like two steps forward, three back, 5 forward, 4 back, etc. The course is not defined, never smooth and always rocky. Every day is a crap shoot. You know you are winning when you actually have a day when you do not think about RAD. RAD kids do everything they can to make you feel un-loved. All you ever wanted was to love a child unconditionally and here is a child that makes it as impossible as they can. You have to fight to break into their shell and then you still have to fight. And fight. And fight.

My heart breaks for that mother and those boys. Someone needs to help her so she can help them. They all need a big blanket of love and support. Come on, now, at least she didn't put the kid on a plane back to his country with a note! She was willing to risk herself to help him and all of them. She made herself vulnerable because she loves him. No, she was not doing a very good job, but I know I have also struggled. I am lucky in that I know about RAD, was well educated before tackling it, and have the support of a wonderful husband and a big blog community. She has nothing.

Friends of the blog world, fellow RAD parents, we need to help people like this. We need to reach out so that the children can be served. So many good people want to do the right thing by adopting but are totally unprepared for the hard parts. How do we reach them?

Thursday, November 18, 2010

Sweet Hope

For several years now I have read and supported the efforts of a lovely lady named Elle. We got to e-know each other during our adoption processes. Each of ours was a twisted path of pain and ultimately joy. You cannot share a journey like that without feeling somehow truly connected to someone.

Now for the good part. She makes candy. Truffles and caramels that the best candy makers in the world would be jealous of. She makes these sweet treats and sells them only once a year. Every cent she makes she sends to support a small orphanage in Mirnoe, Russia (at least I think it is Russia, they keep changing the names and country lines and I am so confused!) Did you hear me? She does all the work and then sends every single cent to the orphans.

Want to impress family at the holidays? Need gifts to give to all of your co-workers at the office? Looking for something extra-special for someone you care about? Teachers gifts? Stocking stuffers? Head on over to Sweet Hope and show Elle some love. I guarantee you will not be disappointed. Plus, once you tell your gift recipients about that 'every cent goes to orphans' your gift will warm their hearts. It's a win-win situation.

Oh, and don't forget to buy a little something for yourself. If you don't you will be sorry!

Go visit www.sweethopefoundation.org

Hurry, time to place orders is limited. Go now. I'll wait.

Wednesday, November 17, 2010

This is how my heart breaks

People who see Ahren do not see what I see. He is an adorable little boy with curly hair and big dark brown eyes. He is beautiful. Happy. Funny. Animated. I see that, and I love it, but I see more.

I see today when we were in the checkout lane at the grocery store and Ahren fell over and hit his head on the elderly lady's cart behind us. Nothing tripped him, he wasn't messing around, he just lost his balance. And he got hurt.

Then this afternoon he was standing in the hallway trying to open a bag of chips and he fell over and slammed his cheek into the wall. Now he has a big bruise even though we iced it. These are just two of the examples of the things that he deals with every day, many times a day.

The other thing we have noticed is he is having trouble chewing and swallowing. He chooses soft foods every time. He refuses things that have to be chewed and swallowed. He eats pancakes, pasta, mashed potatoes and cereal soaked in milk. I cannot get him to eat many other things now.

He will not follow his brothers up the play set. He will watch them and eventually climb up the stairs, but he can't climb the rock wall anymore. He is getting very hesitant about the physical activities.

His speech is losing ground. Sometimes I cannot understand what he says. It is very slurred and mushy. It didn't used to be that way. Now, well, it is difficult to understand.

My fear is that this is the best Ahren will ever be. That he will deteriorate from here. That he will never realize his full potential. We fought so hard and so long for him to join our family. This cannot be happening.

Dear God, we listened when you called us to adopt. To follow what you told us in the bible. We were led by you every step. If this is our road, please let us know. We will not abandon this child, no matter what. He is our life, our love, our very soul. We will do whatever. That is our promise.

Hangin with the Homeys

I took the rest of the week off and already had all next week off of work. I hadn't really planned on taking three days off this week, but our nanny's grandmother passed away last night and their family is heading to Alabama today. As sad as I am for their loss, I am breathing a sigh of relief that I can legitimately take the time off.

In the next week we will get the test results that either confirm or disprove the doctors diagnoses. From what I have read (I know, do NOT Google serious things cuz you will freak out. Too late!) an experienced doctor can make the diagnoses from physical examination with about 100% accuracy. There are very unique markers of this syndrome that when all present are definitive. And of course Ahren has them. Ugh! The blood test is then just used as confirmation.

So we wait. (And obsess and try not to Google and lose that battle and .............)

Oh, and the kids have all been very well behaved lately. A little blessing in the storm, I say. Plus the fact that we are settled into a routine, the weekends have been quieter and more family oriented, and they have been able to play outside for hours each day all help. Each day is full of hugs and laughs and root beer floats!

Monday, November 15, 2010

Very Bad, No Good Day

I have a huge responsibility to the patients i see every week. their progress, their success, their very futures depend on ME. How scary is that! There used to be 4 therapists at my work, but now it is just me. i see as many patients, do as much work, even more. I have strived to take a load off of the doctors to free them up for more patients. I do things for the doctors that no one else has ever done.
Today, I felt that I needed to tell them that there may be times in the near future that I need time off of work, and that in the long run I may be less available to them. I spoke to the coordinator first. Her basic response was, 'Please let me know in advance, at least the day before, if you need off. If not, you need to take home the schedule for the next day and call all of them yourself.'
Then, in our paychecks this week, was a list of rules. They were worded in a very derogatory way and made all of the employees (that I talked to anyway) feel like garbage. The main message I got was 'quit gouging the company'! Now all of the people I work with work super duper hard, care immensely about the company and have a great work ethic. So what the heck? And the nerveless balls they had to put it in a note in the paychecks. They can't address us directly? Cowardly bastards!
So I asked my dear Dr. W about it, and he DIDN'T KNOW ANYTHING! Say what? That tells me everything. I wish this wasn't the internet because I want to tell a certain doctor and his wife what I really think about them. They portray themselves as true Christians and then turn around and stab others in the back at their time of need. Lead by example, I say. Do not condemn those you do not know.
And, for the people who do not seem to have a heart or a soul: kiss my bohonkis.

My days at work are numbered. My kids mean more than their crappola.

Sunday, November 14, 2010

How to pass time quickly

Yesterday we donated blood and then came home and did chores. Those chores involved entertaining 3 very rambunctious boys. I was exhausted long before bedtime.

Today Kaytee came in town and we took the boys bowling. Black light bowling of course! That didn't even come close to wearing them out. Then we went shopping for clothes. Then grocery shopping (oh lord save me!) and home. Again I am exhausted and they are not. Dang!

I sent them all to chase puppies in the back yard and to swing for a long time. Now we have had dinner, baths and fresh jammies. I am ready to fall in bed. Them, not so much.

I want to slide by the next week or so until we have some test results but I am afraid they might kill me! How much energy can three boys have? Don't answer that!!!

They are saving me. My love and attention to them is all I can think about. My brain is occupied. Thank the Lord. Thank you my boys. I love you so much!!!!!

Friday, November 12, 2010

Emotional Jeopardy

I am sitting here trying to figure out exactly what I am feeling. I just can't put my finger on it. I have spent the last two years trying to figure out Ahren. Much like Schrek, Ahren is an onion. Layers and layers.
I knew before we brought him home that he had serious motor delays. He didn't roll over until he was 10 months old, sit unsupported for many months after that, and didn't walk until he was almost 2 years old. His foster mother was very concerned about him and asked us to pay for her to take him to a specialist in Guatemala. That ortho doctor placed him into boots/braces to support his feet and lower legs. When we brought him home just before his third birthday, he was so floppy and hyper-flexible that he seemed like a rag doll. He could barely crawl up onto the couch.
The doctors here thought it was all due to poor nutrition, lack of stimulation and very little exercise. They thought that he would catch up if only we fed him a super-good diet, gave him lots of stimulation and worked his muscles. So that is what we did and he improved. He grew and gained muscle and seemed to be catching up. But then, the progress slowed, then stopped. And then, certain things seemed to get worse. During this time we were seeking help from our pediatrician, the orthopedist, a pediatric nephrologist and anyone else we thought might be able to help. The pediatrician threw out that muscular dystrophy was a possibility. The nephrologist felt that his kidney issues were a compensatory mechanism for an underlying metabolic disorder. We got an appointment with a world class pediatric neuro-muscular specialist, but it was 9 months away. So we waited, tried over and over again to get in sooner, and tried to be patient.
Finally, the appointment day was here. I was of two minds. My gut instinct was that something was not right. I wanted someone to listen and try and help. But I also wanted to have them tell me I was crazy, an overprotective mama who was imagining things. Seriously, I would much rather be embarrassed than right.
There were three doctors and they spent over an hour taking a history and testing Ahren. They tested his reflexes, his strength, his motor skills, his coordination, his eyes, his walk, his every movement. When they had him watch a finger move back and forth, his eyes twitched rapidly. When they tested his reflexes, the muscles quivered but did not jerk. When they had him walk heel-toe he fell over repeatedly. Over and over again he was tested and they looked concerned.
The top contender, the syndrome that fits his symptoms the best, is a beast. I barely looked at the description and then shut down the page. I do not want to know more unless it is a confirmed diagnoses. I did not fight for three years for this child to give in to any stupid genetic defect. I thought long and hard about sharing this with all of the internets, but I truly believe in prayers and well-wishes. Ahren deserves a life. A good life. A life full of possibilities and the chances to make his own mistakes. To love and live and feel life to the fullest. So for the next two weeks as we await results, I am going to enjoy every second. We are going to have fun. Lots of fun. There will be many, many hugs and kisses. Ice cream for dinner. Chocolate for breakfast. Wear our jammies to the grocery store. Put shaving cream on the dining room table. Life is going to happen here.
And if it turns out that all Ahren has is indigestion (hoping!) then we will deal with the totally spoiled rotten brat we have created and love it!!!!!!

Thursday, November 11, 2010

Seth the Shredder

So Seth is the shredder. Nothing to do with all of Ahren's issues. I guess I should have said that right out. It is only with finger foods. He chews and swallows fine. It's only when he has food in his hands that the shredding ensues. He doesn't even know he does it. I think it is a tactile sensory issue fueled by anxiety. By now, it is a habit, one he is not aware of at all.

Yesterday was the big day for us to meet with the top specialist in the nation in neuro-muscular issues. My thoughts were all over the place. Mainly, I thought that they would laugh in my face and tell me I was a 'Crazy Mama' and to take my totally normal child home. Part of me wished for that. And part of me wished that they would HEAR me, and SEE what I saw. Something was not right. My gut kept telling me so. Oh how I wished it was not right. I wanted so badly for me to be an overprotective mother, seeking reassurance and that was all. I wanted to hear, 'Lady, you are crazy!'. But I didn't.

The exam took over an hour. the doctors, several of them, were extremely thorough. test this, test that, look at this, look at that. I was very impressed. They did not hurry in any way. Ahren was their total focus. As i watched, he failed one test after another. Walk a straight line? He fell over. Touch my nose? He missed. Pull this? He couldn't. My heart broke and yet I was so glad they saw what I see.

The results of the exam. He is in big trouble. I was not wrong. All of the top choices they have for what is wrong are awful and terminal. Testing is underway. My dear hubby keeps reminding me not to get upset yet. We don't know. Aw heck. I passed upset a while ago. Now I am numb. These are horrific, degenerative, terminal diseases. And this is my baby. My sweet curly haired, snuggle bunny baby.

If you want to find me, look under the covers and the pillows because right now, I am hiding. Holding my sweet boy every second I can get. Smelling in his sweet smell and feeling his soft skin. Evil stay away. His Mama's love surrounds him. My sweet precious baby boy. I love you more than anything.

Tuesday, November 09, 2010

The Help Wanted Sign is Out

There are several things that I deal with that I struggle over. Most of the 'crap' I can handle with a smile but a few things just get under my skin. Today I bring you Issue #1. I need your help on this one. I am out of ideas. Zippo. Nada. Zero. Craziness ensues. Please help.

The shredding of food.

Explanation: the child proceeds to tear all food into tiny bits before eating them, wiping their hands on their clothes many times, getting food all over their hands, face and body, and making a total mess of a meal.

Reminds me of a raccoon, shredding and washing food ritually before eating it.

Drives me crazy because: this child is a total mess all the time. He cannot go out in public without changing clothes if he has eaten. How can he go to kindergarten next year and eat lunch at school?

Why does he do it? anxiety? habit? sensory issues? control issues? help?????

I have tried reminding him constantly while he is eating but he seems un-aware of the behavior. Rewards and punishments have no effect. They only stress him out.

Suggestions???? Please????

Monday, November 08, 2010

Catching up in pictures

It's been two very busy and fun weeks around here (well, the vomitus maximus, which hit me on Saturday, was no fun).

Ashley practiced her taping on the boys. She gets practice and it slows them down! Win-Win!!

We dressed up Kaytee's puppy, Aspen, as a cow for Halloween and took her trick-or-treating. Aspen was a gift from her boyfriend. Not exactly the gift I would have wanted for a college kid...
Levi enjoying the fall weather on his 4-wheeler, dressed as Darth Vader. It's Vader-Cross!
A recent visitor to our back door. Thank goodness we don't have a doggy door or this little guy would have been an indoors guest. That's an oppossum, for the record.
We carved pumpkins, out in the sunshine on the back patio. There was a lot of drama involved in this activity.

I couldn't convince anyone that toasted pumpkin seeds are yummy so they went to the compost pile.
Seth's big present for his birthday was his very own 4-wheeler. (Which by the way he calls a Form Wheeler) It's bigger than Levi's but slower. (Thank goodness, he is a maniac on it) In fact, it has speed settings and we can lock it out at the slowest speed. Amen!

And finally, the un-veiling of the home-made costumes for Seth and Ahren. Can anyone guess who they are? Only a few houses got it. I think they are adorable.
The backs of their shirts. See the cockroaches?
This kid was absolutely hilarious trying to act his character. He especially loved the facial hair.
See the little fu hanging off his chin? That made me giggle all night.
Levi would not settle for anything other than Darth Vader as his costume. i tried and tried to convince him that trick-or-treating in that helmet would be uncomfortable and unsafe.

Ashley dressed up and went house to house with us, helping the little ones. Kaytee cam along too, but I didn't get any pics of her.
Two peas in a pod.

Behavior is good one day and off the charts the next. Typical for this time of year and all the activities going on. I am handling most of it pretty well. There are a couple of things that are really getting ot me and I will talk about them later this week.

Saturday, November 06, 2010

Ahren's big appointment

The day had finally arrived. After 2 years of trying to figure out what is just not 'quite right' with Ahren, we will be seeing a pediatric neuro-muscular specialist on Wednesday. There is nothing horribly blatant about what Ahren is dealing with. No smoking gun, no giant red flag that would have helped us find answers more easily. Instead, it is a compilation of factors and a mommy's gut instinct.

Here is what we see and are concerned about. In fact, this is the list I will have to hand the Doc on Wednesday.
1) Born prematurely to a woman with no prenatal care
2) Major physical delays
rolled over at 10 months
sat up at 15 months
walked at 22 months with lower leg braces/boots
3) Sacral dimple (defect at the base of the spine often associated with neuro issues)
4) Very low muscle tone, muscles feel spongy
5) Constant falling
6) walks on curled feet or totally flat footed with limp floppy feet
7) incontinence, especially with #2, chronic severe constipation
8) kidney involvement, thought to be compensatory mechanism for underlying condition
9) low energy, easily fatigued
10) speech issues, floppy tongue
11) difficulty chewing and swallowing at first (age 3) better now with lots of work
12) one eyelid droops at times

Maybe I am making a mountain out of a molehill. I HOPE I am making a mountain out of nothing. Unfortunately, even our pediatrician has been very concerned. He sees something not right too. As much as I dread the appointment, I am also so relieved to think we will finally be uncovering the truth and THEN we can make a plan. I need a plan. No matter what, we can handle it, we just need a plan.....

Friday, November 05, 2010

Vomitus Maximus vs Scalded Monkey

This week was going along swiftly and surely, each day moving in the cadence of busy lives and happy kids. Our newest version of normal was settled in and life was, well, not easy but at least predictable.
Then in the wee hours of Thursday morning a pitiful little voice awakened me from a dream about flying. Levi was there beside me telling me his tummy hurt. I asked him if he thought he was going to throw up and he said No, it just hurt. Hmmm, maybe dinner had disagreed with him so I gave him some antacid and snuggled him into bed beside me. Thirty seconds later he sat bolt upright and proceeded to vomit at least 4 days worth of food all over our bed. Poor Chris just sat there in stunned silence, while I ran for towels.
While cleaning up the mess and running dirty bedding and towels to the washer, I must have made too much noise because Ahren wandered out of his room demanding that I go lay with him. Well, little man, that is NOT going to happen right now because I have at least 2 loads of vomit-covered laundry to do and a sick little boy to try and get settled. So Ahren proceeded to sit on the couch in the dim light and sob and moan and complain while I started the washer, re-made the bed, added clean towels for future 'episodes' and tried to re-assure Levi he was OK. Once Chris and levi were settled in bed, I went back out to try and get Ahren to go back to bed. That resulted in a small scream-fest that awoke the rest of the house (and maybe our closest neighbors?) and made me want to stuff a dirty sock in his mouth. Hey, it was 2:30 am and i was ill-equipped to handle the scalded-monkey routine!
So Ahren sat on the couch next to me while I watched a DVR'd show. I used head phones so he couldn't hear the sound and didn't get to enjoy the show. I kept telling him that as soon as he was ready to lay down I would help get him settled, but he adamantly refused to lie down. This went on for an hour at which point Levi woke up and vomited all over the bed again. This time it hit mostly towels and I again hauled a load of laundry to the washer, switched loads and started another. While I was busy, Ahren decided that my absence from him was cause for a nuclear meltdown and yet again he awoke the entire household.
So Round 2 ended with new towels on the bed, new jammies, settling Seth back into bed and once again sitting on the couch with McScreamy. I watched another DVR'd movie and Ahren stubbornly refused to give in and lie down.
Forty-five minutes later Levi was struck with another round of vomiting. This time all he had in him was the water and sprite we had convinced him to drink. And predictably, while I was busy switching out towels and making Levi comfortable, Ahren was busy shrieking his displeasure for the 48 continental states to hear. Repeat Round 2, settle Levi and Seth, threaten Ahren that I will make him sleep in the barn if he doesn't get quiet and try and get all back to sleep. At this point poor Chris had to get up and get ready for work. I stayed on the couch with McScreamy, again and again stressing to the obviously tired child that whenever he wanted to lie down I would help get him settled. (Note: he was not scared, did not have a bad dream, and was merely pissed that I would not sleep with him. I was willing to sit with him until he fell asleep, but that wasn't good enough)
Thirty minutes later....yeah, you guessed it. Round 4 of vomitus maximus. This time when Ahren went postal while I was trying to help clean up Levi, I placed his screamy behind into bed in the guest room and left him. I had lost all patience and if I had to deal with him at that moment it would not have been pretty. I started the 4th load of laundry, re-made the bed yet again, got Levi gatorade and water, and tucked him in. Luckily Seth slept through this one, probably because Ahren was separated by several walls now.
Ahren screamed until 5:30 am. He called me every bad name he knew, screamed every mean thing he could think of, and essentially was as ugly as a 4 year old could possibly be. I will admit it, I ended up popping his pull-up clad butt. It made me feel bad/guilty and just made him madder. In the end, I brought him into my bedroom and made a pallet on the floor next to my bed. I offered him that spot, explaining that Levi might throw up on him so he couldn't get in the bed. He laid down and was asleep in 10 seconds. I snuggled Levi and tried to doze. Just as I began to really relax....more vomit. Ahren woke up and we just decided at that point to call uncle. Ahren and I got up, did laundry together, called Levi in sick to school and let everyone else sleep.
I still had to work all day, so one hot shower, 3 cups of coffee and an energy drink are how I survived, but I think I lost a few brain cells in the process. Or maybe a few million.

Tuesday, November 02, 2010

Quickie update

We survived the birthday-Halloween week with only minor casualties. Sunday was a loooong day, but good. I am working tons of hours helping to cover for our only other therapist who got very, very ill. In fact, she will not be returning to work. I miss her so much! The house is a disaster, to the point that I got up at 3:30 am yesterday to do 5 hours of laundry before I went to work. Yikes!

Life is crazy and I will have many photos soon.