Bronchitis

I haven't posted in over two months because not long after I found out my tests were okay, I came down with bronchitis.  It really knocked me out.  I had two rounds of antibiotics, two rounds of an oral steroid and a steroid inhaler as well as a rescue inhaler.  It took over eight weeks to get over it.  I was healthy for about a week when I came down with another cold.  More fluid in my ears and all the stuff that goes with bad head colds. 

I've started adding more probiotics and coconut oil into my diet hoping I can at least avoid a yeast infection--that culprit that often accompanies antibiotics. 

I'm feeling decent today, so I'm finally catching up.  A lot of things have happened during these two months, so I'll be posting short snipets to catch up.

That's all for now.  Have a great Monday! 

Tracking Paperwork for Special Needs Kids--My Autism Binder

• 
•  
• Hello!
• With six children, four of whom are on the autism spectrum and my toddler receiving services for speech and sensory issues, I need to be an organized mom.  Admittedly, some areas of my life are better organized than others.  Today I want to address something I've never really seen talked about--the sheer amounts of paperwork that comes with a special needs child and how to organize it.
• Whether you are like me with one or more kids with special needs and you've been doing this for a while, or a mother with a newly diagnosed child, you need a way to keep track of the appointments, progress reports, evaluations and 504, IEP and IFSP paperwork.  If you have a newly diagnosed child, I want to especially welcome you.  Take a deep breath and know that it will be okay because YOU ARE NOT ALONE.  You need to know this because I made so many missteps when we were first dealing with a new diagnosis.  The biggest one was not reaching out and sharing with others.

Umm, What Was That Again?

Warning--this post contains information of emergency urological kind.  If you are squeamish, stop reading and enjoy this picture of lovely flowers.  If you dare read on...

Let's Add Another Allergy to the Mix

Okay.  So the doctor visit was mostly helpful.  Here's what I was told.  The rash (because of it's stages), looks like chicken pox--except it's not anywhere on her trunk.  It could be hand, foot and mouth--except it's not anywhere in her mouth.  We are left with being mostly positive it is an allergic reaction to her penicillin based antibiotic.

The plan:  Treat her with a tiny dosage of Benadryl several times a day for the next two days.  Change antibiotics immediately to take care of the strep throat.  Watch for any worsening of the rash or of other symptoms.

So now we make the changes and wait and see.  We have a couple of appointments I'll need to rearrange since I'm going to keep her at home just to be on the safe side. The most frustrating part of this is just not knowing.

Allergies for the Older Kids

So I was thinking about Baby Girl's milk allergy and how it affects the skin on her legs (they always feel rough).  Acroboy has similar feeling skin on his legs.  I decided to take his older brother and him into the allergist to see if they too had milk allergies.  Surprise!  No allergies of any sort for Acroboy.  (Not even the oats we have been avoiding for years).  The allergist said Acroboy must have outgrown it.

I was expecting Whirlwind to have a dairy allergy because of some other problems he faces.  Nope!  Tomatoes though.  He is allergic to tomatoes--which makes sense to me because I've noticed for a long time how much more hyper he becomes after eating a tomato product like pizza or spaghetti sauce.  He is not happy about the tomato allergy.

We eat a lot of tomatoes in our diet (tacos, taco soup, spaghetti, lasagna --pretty much any Italian food, Indian food, sandwiches, etc).  I am going to have to make an effort to bring in more tomato free dishes for this boy. 

Autism and Research

Over the last few years we've spent many, many hours at our favorite Autism medical center. We've had evaluations, therapy sessions, meetings with licensed clinical social workers and physicians of all sorts.  In the last year we began to participate in a study for siblings of ASD kids.  Baby Girl has been evaluated twice now for her development.

The first study she was ahead on some things (motor skills) and a bit behind in communication skills.  The most recent study she was ahead on motor skills again, but she is even further behind in regards to communications.  It's hard to say why she is behind.  Is there a true problem?  Does she not flex her communication skills beyond vocalization because there are so many people attending to her?  Am I too good at reading her body signals and anticipating her needs because she is my sixth child?  Is it that I am splitting attention between her and her other siblings so I just don't practice skills and sounds as much?  

I don't know the answers now, and I'm not sure when or if they will become apparent. I've been so focused on her lack of weight gain and getting her to clap and wave that I admit I've neglected verbally "labeling" items and trying to get Baby Girl to duplicate sounds.  

She also has more sensory issues with sound than I realized.  Up until now I thought she just hated her bath.  All you had to do was shut the bathroom door while the bath water was running and she would start crying.  Once in the tub she would cry and cry and try to stand up all the time.  She screamed when we had to wash her hair and rinse it with water.  One of the researchers suggested perhaps it was the sound of the water running that was scaring her.  

As an experiment for her last bath, I ran the water before I brought her into the bathroom, and gave her some new bath toys.  No tears were shed.  A breakthrough to be sure.  I'm not sure if it was the new toys or the already run bath, but we'll find out when I give her next bath with the water already run.  (I'll keep the new toys out of sight for a minute).  

Part of our struggle with Baby Girl's weight is she seems to have texture issues with some of the foods I offer her.  Toddler foods often have milk in them, so I have to work to find safe alternatives she can have.  Quite a few times I've given her a allergy safe "toddler" food and she just spits it out.  The most common denominator for why she spits the food out is texture.  I'll keep trying, because I know it is important to expose her to new things, but it worries me nonetheless.  

So is my baby heading towards being high functioning on the autism spectrum like her brothers?  I don't know.  We'll keep working with her and watching her.  I am grateful we are a part of this study so  professionals can keep a fairly close eye on her.  At our next visit we should have a better idea of how she is doing.  

In the mean time I'm going to ramp up my efforts to increase her communication skills.  If I recruit her older siblings perhaps it will benefit the whole family.  

Wish us luck.

Acid Reflux Repeat

When Baby Girl was tiny, she had a difficult time sleeping unless she was being held. 

She also spit up a ton. 

Our pediatrician suggested putting her on an acid reflux medicine to help her and it made a world of difference.  She could sleep, she was less fussy, and we didn't have to resort to a keeping a large blanket underneath her to catch all the spit up anymore. 

As she got older and could sit up more, we backed off the medicine.  We worried about the long-term implications for her liver.  We also thought the problem had resolved because the spit up became infrequent and almost rare even when we didn't give her the medicine.

I got a phone call from the GI doctor today.  Baby Girl's biopsy show some inflammation in her feeding tube. Baby Girl had been dairy free for at least a month when she had the procedure, so the doctor was not sure whether it was residual inflammation from the milk allergy, a different food allergy, or the acid reflux we thought she was over.

After we talked for a bit, we decided to treat Baby Girl for acid reflux for at least eight weeks.  At that point the doctor will perform another upper GI scope.  If there is inflammation, we are looking at an additional food allergy.  If it has cleared up, it is more likely to be acid reflux. 

So I'm off to the drug store to get her prescription.  Maybe she will gain more weight if she can keep it in her stomach.  I'll keep you posted.

GI Scopes--Sounds a Bit Like GI Joe Only Not Quite as Cool

Did you ever watch GI Joe cartoons as a kid?  I'm a child of the 80's and I loved to watch GI Joe every afternoon.  Every cartoon would end with some type of lesson or moral message and the phrase, "And knowing is half the battle." 

We had Baby Girl's GI scope and it went okay.  My sweet husband worked from home so I could get up extra early to fight rush hour traffic and be at the hospital for her procedure.  He would have come with me, but we needed to get the other kids off to school. 

I was allowed to nurse her until 7 am and then no liquids whatsoever.  She didn't get any food from before midnight the night before. 

We got her checked in and there were all kinds of kids there having a multitude of surgical procedures done in the pediatric surgical center.  One young man who had a hard time speaking fluidly told me he thought Baby Girl was a cute baby.  He then proceded to ask me what kind of car I drove.  I told him a minivan. He told me he wanted to drive a Dodge Viper, because they were cool. 

He was having surgery related to injuries he sustained from a hit and run accident where he was a pedestrian.  They never caught the person who hit him. He was lovely to talk to, and I admire the courage he exhibits as he is trying to pull his life back together after a devastating accident. 

The procedure went smoothly.  The most heartbreaking moment for me was when I walked Baby Girl back to the operating room and they put the gas mask on her so she would go to sleep.  The look on her face said, "Why are you doing this to me?" 

She looked so tiny in her recovery bed. 

The doctor did not find any obvious signs of inflammation, but she took biospies of several areas to test.  We'll know the results in a few weeks. 

And knowing is half the battle. 

Maybe then we can have a plan of action that will allow us to help my daughter gain (and keep) weight. 

Baby Girl has lost half a pound (again)

Darn it.  I really had hoped we had turned a corner on this when she had gained a pound in two weeks time.  One week and a half later and she is back down.  Our primary care provider wants us to go ahead with the GI scope for next week.  She just shouldn't be losing weight like this. 

I think I obsess over her weight more than mine. 

I am feeding her at least four times a day, snacks and now we've started supplementing with soy milk since she is allergic to cows milk.  I'm at a loss of what else to do.  There are days I feel like I'm feeding her all day long.  I'll keep it up as long as I need to though. 

And even though I had planned on nursing her a long time (she is my last baby after all), I am thinking more and more about weaning her.  (Just in case I am the problem here). 

Urgent Care visit for eye injury

Until a little over a year ago, I had never had to get stitches for any of my kids--even though I have some daredevils with ADHD.  Then, in December 2011, Lawboy thought it would be funny to scare Acroboy.  He did and Acroboy jumped and hit the trim on the half-wall.  Acroboy split open the skin underneath his eyebrow and I could tell he would need stitches.  We tried the urgent care first, but it turned out they had just closed.  We headed to the ER instead.  Acroboy got three stitches.  He had a hard time with the needles and there was basically a team to hold him and fix him up.  

Fast forward to today.  The same two boys were messing around again and Lawboy ran into Acroboy, who now wears glasses.  The glasses smashed into Acroboy's face and now he has a cut above his eye.  In the same place as last time.  

I'm feeling a little bit of déjà vu.  This time the urgent care is open and the cut will only require a little medical superglue instead of stitches.  I am grateful for that.  It could be worse--much worse, and for that I'll count my blessings.  

Baby Girl gained a pound!

We saw the allergist today and she has gained a pound in just two weeks!  The pediatric allergist wants us to continue to eliminate milk from her diet.  We are to reintroduce milk products at 18 months. 

I know we have had a lot of family members praying for our sweet little girl and I am thankful for those prayers.  I trust in my Heavenly Father and in my Savior that we will somehow get the answers we need and that my baby will be all right.  We'll do our part, but ultimately it is our of our hands. 

Failure to Thrive

Failure to thrive. 

It feels like a punch in the guts.  What is going on with my baby girl?  I feed her a lot--just as much as I've ever fed her older siblings, yet this little girl cannot seem to put on more than a few ounces. 

She was 17 pounds at the beginning of the year and here we are nearly five months later and she has only gained a pound or so. 

I took her to a pediatric gastroenterologist to try and figure out what is going on.  She saw how my little girl started off in the 95% percentile for weight and has dropped growth curves until she is now just below 10%.  She looks like a healthy, happy baby, but those growth curves tell us something is going on.  The doctor doubted Baby Girl would test positive for Celiac disease, but suggested we run comprehensive blood work and scope her to determine if there are any physical reasons she may not be absorbing her food well.  She diagnosed her as "Failure to Thrive."

Developmentally she is doing well enough.  She started walking on Easter Sunday and she seems pretty social.  I am concerned about some sensory sensitivities I see, but time is needed to see if they will be an issue in the long run.

The GI doctor also wants us to talk to a pediatric food allergist.  She made a recommendation and we will go in to try and figure out if there are other foods we should avoid.  I've started milk elimination from my diet and it seems to make a difference--at least in her skin.  We'll figure out what else we need to do I guess.  We pray for our little girl and her doctors.