tests!

I posted this earlier today....

"Would appreciate receiving prayers over the next 48 hours for rhiannon (and me)! Rhiannon is going to have a ROUGH next 48 hrs, I just know it! On Wednesday morning at 9am she is having a hydrogen breath test to see if she has fructose malabsorption & an infection in her digestive system! In order for this test to work WE MUST follow a VERY STRICT diet..white rice, white bread (limit), white potatoes, baked chicken & water only...up until 9pm. After 9pm she MUST FAST for 12 hours before her test. The test will be 2 1/2 hrs-3 hrs long she is NOT allowed to sleep or "excerice" (her roudy playing which she loves to do, she must be calm which is NOT HER) during the ENTIRE test. Basically, for the next 48 hrs Rhiannon MUST be by my side so I can keep a close eye on her to make sure she doesn't sneak any food bc you know rhiannon! The slightest sneaking will throw the test off & we will have to reschedule."

 I have an update....

" FAIL!!!!! RHIANNON FOUND A MARSHMALLOW!!!!!!!!!!!!!!!!!! THIS IS UNBELIEVABLLY HARD!!!! YOU HAVE NO IDEA!!!! I had everything put up too....apparently NOT!! PLEASE EXCUSE WHILE I CRY!!! Her appt has been rescheduled for THIS FRIDAY 9AM. Fasting begins THURSDAY!"

a little history

A little history.

Back in January Rhiannon was 1 year & 3 months.  I suspected that something was not quiet right in the speech area.  I felt lead to call Holly Ridge Center....even though doctors & friends said, "Ohh her speech is fine! She will catch up!"

I may be a young mom but I am not "young" in taking care of children! I have been surrounded by children my entire life & have taken care of children from a very young age, watching out for my little brother when it was just the two of us at home, volunteering my recess hours in elementary school to work with the other special needs children, baby sitting other's children at a very young age, working in the church nursery in CT & then here in WA, teaching in the 2's & 3's at our church, for my elective college classes I took Child Education classes, the list truly goes on......I would like to say I am VERY Experienced with working with children.

My first initial thought was...what am I doing as a mother? Am I failing?  Bud LOVES to read! He always has.  We started him young and he still LOVES to read.  Rhiannon likes books. We read to her. What is going on? Granted being the first child I probably did not read to her as much as I did with bud BUT bud & daddy took up that slack so she is surrounded by books & is hearing them!  Something just was not right.

Rhiannon's evaluation showed that she WAS behind in several areas. Some more then others.  In the speech area she was close to 8 months behind! She was 15 months old but in the speech area was at a 7 month old level.  Pretty much still at the babbling age! I KNEW something was not right!  She was hardly saying mom & dad...she has never said yes or no or up or cup.....nothing.  We signed to her...but her signs were just not too clear & exact you had to really pay close attention because a lot of her signs all appeared to look the same!

At about that same time I signed up to be an Independent Consultant with Usborne books & more! Why? I love these books! I always have. Sure...you can find some here & there in some book stores but the ONLY way to get your hands on the over 1500 different products is through a consultant---ME. I have always bought friends & family educational items as gifts...so why not make a little money off the type of gifts I already buy?  Plus...NO minimums to maintain! I'll take that.  I had no idea what all this business had in store! The endless opportunities awaited me and I had NO idea!  There is so much to say about this...but I will save that for another post ;)

ANYWAYS....because I joined Usborne Books I had More Usborne books here in our home.  THIS was honestly the blessing....because these books are EXACTLY what Rhiannon NEEDED! Keep in mind we LOVE BOOKS we have always have books here in our house...but not very many Usborne Books.  What makes these books fantastic?  These books are fun & engaging they are created to capture a child's attention & encourage them to love reading so that way they will love to read for years to come & that way it will stick with them for the rest of their lives & so that they will become more successful in life so that they can reach their fullest potential! Everything begins with books! Any books! They are the ticket to the world.

I noticed a change in Rhiannon. She began to pick up books more. Her favorites are the texture books. She IS a tactile learner. She NEEDS these types of books!  Usborne has A LOT of these books! At first it was just touching the books & me repeating the word.  But, now, 6 months later she will pick up several of the books & her brain makes a connection to what that word is!  She is also repeating more & recognizing what objects are what. Bright....engaging...fun.

It was one month between her evaluation & her first in-home speech therapy session.  Her speech therapist was absolutely AMAZED at home much she has come along. She continues to  be amazed each & every time she sees her!

I am amazed! Rhiannon LOVES books...she LOVES to sit on your lap & "read".  I have noticed a difference in books. It is interesting that she knows the difference between books.  Some non-usborne books she will pick up, you begin to read & she is gone.  She will grab several & do the same. But, then one book that she finally finds she will sit the entire way through the book & want you to read it to you again...as you can guess....those are the Usborne Books!  I honestly think she knows the difference!  These books fully engage her & have sparked her interest. I am so thankful that God has given me this opportunity of being a book consultant & spreading literacy around the word, especially in my own children's lives! I am amazed!

Yesterday chris said rhiannon wanted to read a lot a couple days ago.  I said well we are always reading here at home (I was gone the last week in TULSA, OK) so I am not sure how much reading she got the last week with me being gone.  Chris said we read a book here & there...but a couple nights ago she was just bringing more books so I grabbed the big world war book (if you have not seen this book you MUST see it) and she sat on my lap for more then 20 minutes while I read it to her! What 1 1/2 year old will sit on your nap for that long reading a tet like book? Umm...I do not know any other ones besides Rhiannon!

Rhiannon's speech has just took off!  She is talking so much, making connections learning! Ohh it is so exciting!!!  It has been a long process. Sure...she might have caught up...but, something was not sitting right with me...and if I have opportunities to help my child I am going to do it! I am so glad I did!

Rhiannon has been doing awesome! Just being gone a week....I have noticed how much she has changed in just the last week. My baby girl is growing & learning.

We are still trying to work out her food issues. Right now NO gluten, dairy (ALL FORMS-butter, milk, whey, sour cream, yogurt...the list goes on), tomatoes, apples, ALL juices, corn syrup & frustose syrup.

After a long month & a half wait....we are seeing a GI specialist TODAY to see if there is anything else we can find out about our little missy. Please pray we figure somethings out because there is still something not right with her...all work in progress.

cute thing rhiannon said...

Rhiannon can you say "I love you?"
Can you say "I"?
EYE (points to her eye)
Can you say love?
LOVE
Can you say you?
ME!

EYE..... LOVE....ME!

It has been way too long!

I can not believe it has been over 2 months since I last updated our blog!!!!!

As you have noticed...it has been insane!!!  Seriously!  I don't even know where to begin!



Rhiannon was the hot topic the last few posts so I will try my best to catch everyone up to speed.
Rhiannon's speech has improved A LOT! Her in-home speech therapy began end of march. Since we were unclear about a possible hearing issue they wanted to watch her speech to make sure she doesn't get more delayed. Well, we have been working with her a lot! Signing to her more, reading to her more (yes, using usborne books of course because they are the BEST books to use for all children!) & just really focusing on her & helping her! It has been H.A.R.D work.  But, to see how much she has come as far as speech it is amazing! Her therapist is amazed!

Just as we thought we had everything figured out with her...other issues started to come around! A few weeks ago she had gluten & dairy and the next time a nasty diaper rash was the result.  That rash developed into a nasty yeast infection that just WOULD NOT GO AWAY. She had it for about 2-3 weeks!!!

We also saw a nutritionist last week at Mary Bridge!  She was easier to get into then the GI doctor.  So, we are going this route since she works closely to the GI doctor!

Rhiannon's new diet is complex. Tiring. Poor baby girl has just had such a rough last week!  I am supposed to be making a journal...but this mom has also had a rough last week dealing with this baby girl!

Continue no gluten & dairy. NO JUICE OF ANY KIND-ohh wait 2 oz of strait cranberry juice (bitter) with 4 oz of water ONLY.. NO APPLES. NO TOMATOES. No Corn syrup/fructose syrup!!!  I want you to take a moment and go through your pantry. Please read the labels. Begin to feel my pain.

It seems like everything has one of those items above. We did GREAT last week when we were out of town! This last week being home. SHE IS INTO EVERYTHING. EVERYTHING.  It is like her BODY is CRAVING it!!! It is a little heart breaking.  Like I said...it has been a rough last week!

Speaking of last week.....we took her into the doctors on monday! Her yeast infection..was still lingering! Guess what....She also has some type of viral going on...it is called Gianotti Crosti Syndrome.  Basically they have no idea what it is or anything about it.  Nothing we can do about it the rash that is all over her body will "go away on its own in about 6 weeks" or at least that's what the Dr suspects. This has no connection to her yeast infection she had which is "gone for the most part". Feeling skeptical I feel like the peds pulled this one out of their butt.  Agree?

02/25 Audiology

I have found some time to update a little bit more on Rhiannon! If you are a little bit behind scroll down to catch up!

Rhiannon had an audiology appointment on 02/25.
The Audiologist was a little concerned on one count but likes to have 2 counts of concerns before he "takes" action.  He said if we really wanted to we could go to Mary Bridge & they could "put her down" and do an audiology test that way but...he doesn't recommend it!  So for now we will be working with her on body parts. So that way in about 6 months when we say, 'where is your knees" she can point at her knees (look down away from sound) then the audiologist will do his thing.

Wednesday 02/26

I quickly got the kids dressed & headed out to our music class! As we sat down at the music class I was startled!!!!! Rhiannon had a ton of dry blood in her ear! She scratches her ears but I have never seen that much blood caked on! I was able to get into the ENT within 2 hours!

So after the music class we headed on over to Dr Smart at Life Force Chiropractor so Rhiannon could get adjusted. Laugh all you want...but Rhiannon had been doing much better seeing Dr Smart! Our appointment was almost an hour later then when we got there but Dr Smart quickly got us in. We were in & out of the office in less then 15 minutes! woot!

We rushed into the ENT office barely making it in time for our appointment!

Dr rice decided to get the big ol microscope out for a closer look! Well..HE COULD NOT SEE RHIANNON'S EAR DRUM! Blood filled her entire ear canal!  Since he could not see her ear drum he said that he would prescribe ear drops to help fight infections (just to be on the safe side) & to help break up that dry blood! He would like to see her back in 3 weeks!

Wednesday 03/05

Today was Rhiannon's Review!  If you remember a few weeks back I posted about her evaluation at Holly Ridge & how they wanted to have her go into a play group 1-2 times a week. WELL...because there is possibly a hearing issue going on...they want to closely monitor Rhiannon over the next year! So, once a month, in home, Rhiannon's new speech therapist, Katie will be coming for a visit!



Today (03/08) was the FIRST night since about......sunday/monday that Rhiannon has had "non safe" foods. And guess what happened?! As much as WE don't want to go ALL "free".....we are realizing that this may HAVE to be an option! Good thing I am taking that Gluten Free Class on Sunday Afternoon at Jak's Cafe and Espresso! 

PHEW!!!

Well, It has been about a week & a half since I last updated about Rhiannon! 

Let's see in the past week & a half she has had about 4 appointments!!!!!

Monday, Jan 24th she had an appointment with Doctor Anna Colombini a Naturopathic Physician! I was REALLY unsure about going to a Naturopathic....mainly because our insurance does NOT cover =(  

• Going to a naturopathic is different then going to a regular primary care doctor. This first appointment was about an hour long! A Naturopathic doctor wants to know every detail about not only the patient but also the people in the family! This was new to me! All I could think is....did I share too much info? Or Not enough? Regular doctors do not care about the details!!!
• Doctor said that Rhiannon has an overgrowth of yeast. To help heal her gut/figure out if she has some other food sensitivities  She suggested:

1. 1 tsp of fish oil. I was able to find some "children's" fish oil online at amazon. This office had some samples they gave me! It is strawberry flavored!
2. 1/4 tsp of UltraFlora a day
3. A "diet" which basically eliminates EVERYTHING Dairy, wheat/gluten, Corn, Soy, Peanuts. Then slowly re-introduce foods one at a time.
4. 96 IgG Anti Body panel (tests 96 different foods)...Our insurance does NOT cover this.....so we are probably going to have to pass on this...because for this test it is $239 out of pocket! YIKES =/
5. Kefir 
6. Tea Tree essential oils (melaluca) mixed with olive oil/coconut oil, apply 2 times daily for bottom rash.

PHEW! Overwhelmed yet??

I AM. I mean...it took me about a week to wrap my head around this to share it with people!! Overload!

Pray for us (me) as We adjust to all this...and the new "diet" yikes. Gulp. My poor husband!  Cooking in the kitchen hasn't been going as of late.  I just do not know what to cook! I do not want to make multiple meals!! =/

so....things that you can keep me accountable & encourage me to do this week:

• make a meal plan
• find "safe" meals that we can all enjoy! Send me recipes!
• make a cleaning schedule

WELL I was going to update about ALL her doctor appointments this past week BUT that will have to wait because....I AM SO TIRED! Also...I just heard the washer go off Which means I have clothes to put in the dryer...and that means I CAN GO TO BED! =D

Wednesday Appointments!

Wednesday was a very busy day for us!

We had our weekly music class we attend! The kids LOVE Mainly Music! We have been going for a while! 

After our Music class we went over to Life Force Chiorpractic!  Dr Smart's wife & sons go to Mainly Music as well!

It took a little while for Rhiannon to warm up to Dr. Smart! But, she did eventually let him adjust her! He adjusted her in 4 areas-Left Atlas, Right Sacroiliac Joint, Sacrum on the Right & Decreased Parasympathetic Activity!  These 4 areas just so happened to....have an impact on the "issues" she has been having!  After she was adjusted....you could just see relief on her face! She just seemed so much happier! Shortly after putting her in the car...she fell alseep & slept for at least a GOOD hour!

I am amazed that your spine being slightly out of wack can have effects on your body! The human body is amazing!  After seeing the relief on Rhiannon's face....it made Me want to get checked out! I joked with chris saying maybe if I get adjusted I will begin to gain weight ;) maybe something is wacked out in my body causing mixed signals? You never know ;)

Rhiannon also had her evaluation at Holly Ridge yesterday!  She appears to be a little mature in some areas and a little bit behind in speech but they do not think speech therapy is necessary. But, they would like her to attend a Little Tikes group 2 times a week that focuses on language & speech!  

In the past 2 weeks after contacting holly ridge I have been really focusing on Rhiannon & she is doing much better!  I have heard , "ohh she is still developing, she will catch up, she will be fine!" I may be a young mother but I have been around a lot of kids my entire life, I have worked with children at a very young age myself & am very aware of delays that can occur.  Also there are different learning disabilities that run in my family.   

I am ALL about EARLY PREVENTION!  If I have programs available to help my daughter NOW & to teach me how to help her NOW while she is still developing--you better believe I am going to take advantage of that! And...if you as a parent may think your child is behind in an area..you would be smart too to take advantage of the programs available! I want to help my child NOW while she is still developing. If I am aware of her struggles and get help now before she begins school I can work with her NOW instead of waiting until after she begins school & problems & delays come to the surface that could have a HUGE impact on her. Over Reacting? I don't think so.  I want My children to be the Best they can be & be the Best what God wants them to be without limitations! I want them to thrive & have opportunities! I want to help them grow & be successful...and it all begins NOW....well...at Birth! I will get off my rabbit trail ;)

As far as hearing.........we baffled the 3 specialist in the room during the evaluation! A lady pulled out a wrapper. They use a wrapper to "test" hearing as well as another device.  Rhiannon SAW the wrapper & kept an eye on it. She has awesome peripheral vision! She knew it was behind her! I knew she knew!

I said, "Can I have that wrapper?"

"Sure! Here you go!"

I put the wrapper behind me so Rhiannon couldn't see it. Out of sight out of mind. I waited a few seconds for her to get focused on something else. As soon as she was playing with other toys I grabbed the wrapper. I started crinkling it directly behind her, moving it back behind her left ear, right ear, left ear, right ear, back behind her head.

NO RESPONSE from rhiannon.

It wasn't until I moved the wrapper to her side where it caught her attention & she responded to it.

The 3 specialists in the room....dropped their jaws! It was pretty.........funny?  That we baffled 3 specialists! One lady said..."I strongly recommend she see an Audiologist, I will be putting that in the report!" 

I have been trying to PROVE this to everyone-But I always hear, "She is perfect, she seems to be responding!" Which, she does appear to be hearing. Just...not always responding from behind! Really weird!  They were not able to do the actual hearing test with the device because her ear hold is sooo small! Rhiannon kept saying "Stop!" (i recently switched the baby signing dvd-stop & go was on this new dvd so she has learned STOP!)

FINALLY....I was able to SHOW people!

One of the other ladies at the evaluation stayed a little bit after to talk to me.  She said it may be a certain tone she is unable to hear directly behind her. She also said that her speech isn't too far behind but all that could come to a screeching hault.  She explained it this way:

You tell your husband to do the dishes every single day. He doesn't do them. What will eventually happen? You will stop asking him.  The same thing could happen to rhiannon. Eventually she could stop listening for that one tone & her speech could just become very delayed. That tone will be lost. Then, she would be "lost".  The lady also said for every 1 month of waiting to find out what is going on with her hearing could delay her speech by 6 MONTHS!!! 

She then said I am going to talk to you mom on mom level.  Keep pushing doctors. You have to be pushy!  Don't be afraid to be pushy!  Follow your mom gut!

I am thankful for the encouragement of others who have said keep on it! Keep following your instint! You are the voice of your child! If you don't speak for her...no one else will! Thank you for that.  Honestly, I almost feel like giving up at times! It has been so overwhelming & exhausting!! But, This is my girl! My precious baby girl God blessed me with! I need to keep fighting for her & get the answers!

Rhiannon after her evaluation at Holly Ridge!

This coming up Monday she has an appointment with the Naturpath.  I have heard great things about the doctor I am seeing...but I am just not sure! One again...going back to the Cha-Ching-Ching $$$!  Chris has been teasing me about gas miles & money. I asked him, "Ok, what would you like me to do? Drop eveything & forget about it? Just tell me what you want me to do!" He said, "I do believe something is going on, just fix her. Figure out what is going on!" 

On Tuesday she has an appointment with Audiology for a test! They assured me that they have several ways to test children's hearing.  

Chris still needs to do the second sleep study to determine if she will need adenoid removal surgery. Which, I really don't want her to have surgery! I told chris I do not want to do the second sleep study! I did not like that! I wanted to poke her so many times during those "seconds" of not breathing! Not a good thing to see as a momma! I resisted the urge of poking her each time she did that! And told chris he is doing the next one! lol

ENT Appt

Today (umm..I mean yesterday-YIKES) Rhiannon had an appointment with the ENT Specialist!

Funny story...
As we were waiting to go in the back there was this older man & a much older lady (looked like a son & mother).  The sweet old lady said, "Why are we here?' The man said, "To check your ears!" The lady says, "Huh? WHY ARE WE HERE?" The man said a little bit louder, "To Check Your Ears!" The lady said, "OHHHHH............ok.........."

We saw Dr. Rice!  Very nice man.

On a scale of 0-10 (0 meaning adenoids not at all enlarged) Rhiannon is at a 5.  Her tonsils are normal size. He was not too concerned about her. He said the only time he will do surgery is if she has several periods during sleeping time where she goes 5 seconds without breathing.  If she does this she wants to see her right away to schedule surgery to remove adenoids!

I told chris this info. He said, "She does that! That is why I got No sleep when she was a newborn! I kept checking on her!"

So, my homework for today was to WATCH HER for 30 minutes to see how she does.

There were several times where she went several minutes without "breathing".  She would have a steady breathing rhythm then stop, then either "wake up"/cry/spasm/move. Poor girl! No wonder she is so grouchy! She hasn't been sleeping well!  I will be talking to Chris to see what he wants to do!

I asked about her having some issues in the digestive track would cause adenoids to be enlarged. He said it hardly effects that.  Usually when children have large adenoids its genes.  Well makes since because my brother Zackey had large adenoids & my father has really bad sleep apnea!

Rhiannon continues to get bad rashes. Every road we go down seems to be a dead end.  We may go (I actually have an appointment set up next monday) to a naturopathic to see if she can figure out whats causing rhiannon grief! Poor baby.

I think she will be seeing a chiropractic tomorrow!

Tomorrow is also our appointment at holly ridge for an in-person evaluation! Busy Busy Busy!

(Tomorrow meaning Wednesday). YIKES. I MUST GET TO BED!

Bud looking at the ear model!

He thought it was pretty cool!

ENT

Sweet baby girl! Been sooo pooped!

I got to watch this baby girl sleep for 30min!

ENT

I was able to get in touch with an Ear, Nose & Throat specialist about setting up an appointment for Rhiannon regarding her enlarged adenoids!

Rhiannon has an appointment scheduled this coming up Tuesday with Dr Rice!

real quick

Just a quick update...

Today I received a call from the nurse regarding Rhiannon's xray done on her adenoids.

Her doctor would like her to be seen at an ENT (Ears, Nose & Throat) Specialist!  I was finally able to sit down & check which doctors are covered by our insurance! I have it narrowed down to two! I tried to call today but the office was closed! I plan on calling the office tomorrow morning!  Hoping we can get in soon!

Also, her in-person evaluation at Holly Ridge (get caught up here)

I am so happy that we are finally receiving answers!  I just KNEW something wasn't completely right with our baby girl!  I am so thankful for Early Prevention services!

results!

Results are in from rhiannon's allergy test!!!

EVERYTHING came back NEGATIVE! 

I am thankful for no added allergies but this makes me go...............HUH?!?!?!?!?!?!?  

The doctor wants me to try her on Lactaid. He thinks that she may be Lactose Intolerant!

Differences between Milk Allergy and Lactose

Intolerance Milk allergy should not be confused with lactose intolerance. A food allergy is an overreaction of the immune system a specific food protein.When the food protein is ingested, in can trigger an allergic reaction that may include a range of symptoms from mild symptoms (rashes, hives, itching, swelling, etc.) to severe symptoms (trouble breathing, wheezing,loss of consciousness, etc.). A food allergy can be potentially fatal.

Unlike food allergies, food intolerance do not involve the immune system. People who are lactose intolerant are missing the enzyme lactase, which breaks down lactose, a sugar found in milk and dairy products. As a result, lactose-intolerant patients are unable to digest these foods, and may experience symptoms such as nausea, cramps, gas,bloating and diarrhea. While lactose intolerance can cause great discomfort, it is not life-threatening.

Added information from a friend: "I agree with all except lactose intolerance does involve the immune system... BUT it cannot lead to anaphyletic shock, so not directly life threatening. But it is true... you DO NOT OUTGROW either. The missing enzyme causes the body to insufficiently break down the amino acid strains of the lactose, those insufficiently broken down strains are what can wreak havoc on your immune system. Symptoms vary per person depending on a host of issues including whether your body allows these insufficient strains to "leak" through the stomach wall... symptoms also often change as your body goes through chemical changes as you age (which is why many people feel they "outgrew" their intolerance.)..Lactose intolerance can cause many more symptoms also (it is not just digestive issues for most people) symptoms can include things such as tremors, sleep issues, ear infections, hearing/ speech issues, and memory processing issues, nervous system disorders, increase in a child's ADHD and Autism symptoms, excessive saliva production, excessive sweet and noxious body odor, excessive mucus production and congestion of the sinus cavity, throat, and lungs which can lead to asthma and chronic pneumonia.... and this is just a short list..... not sure where you found that statement about lactose intolerance, but I think we can call it the understatement of the year, lol."


We went and had that X-Ray done of Rhiannon's adenoids (read here to catch up)! Boy was that FUN ;) Ohh my goodness.....Rhiannon did NOT do well with THAT!!! ALL she had to do was SIT there! Nope! Took me & another lady to make her stay still & another lady to take the photo!