Ryla Update

Ryla is doing so much better.  We got her lab results back and her red blood cell count is going up.  However, because it is still so low they are having her do weekly blood draws to monitor her progress.  The medicine they put her on for her tummy seems to be working.  She has only vomited once since coming home from the hospital.  This also means that her appetite has improved.  She gained half a pound in the week leaving the hospital which means she is at a whopping 19 pounds :)  They have also found no more blood in her stools which is AWESOME!!!  Right now, unfortunately, all of the kids have pretty bad colds and coughs.  So there hasn't been much sleep going on lately but we are pushing through.

Ryla's Hospital Experience

This past weekend with Ryla was one of the more challenging parenting expands we 

have had.  We lived in a world without answers for nearly 24 hours, and to some degree 

we are still there.  A challenge we have had with our little angel is that since the end of 

January she had bee throwing up several times a week.  It seems to have gone in 

waves.  She may have throw up every day for 5 days, then not at all for 3 or 4.   I the 

last 2 weeks her vomiting has become more significant.  We also noticed that she was 

just the whitest little girl you have ever seen.  We attributed this to her red hair and 

thought little more of it.   We have called the doctor a few times about her vomiting, but 

have always been reassured that it is normal for toddlers to throw up when they cough 

excessively, cry for a long time, or just get too wound up.  But as this has drug on we 

decided a phone call to the doc just wasn't enough.  So we scheduled an appointment 

for las Monday to have her seen by her doc.  

LB took her in to for the visit, and to our surprise, the doc was not as concerned about 

the committing as she was about Ryla's skin color. She checker her eyes and gums and 

told LB that Ryla should be tested for anemia.  This required a blood draw to check her 

blood count.  This was the start of our adventure.  The first blood draw attempt involved 

a lot of needle poking but no blood being drawn.  The second visit they tried a finger 

poke, which didn't produce enough blood. At that point we decided to avoid. The Holy 

Family Outpatient Lab at all costs.  So, on the third attempt and second lab we finally had success.  We got a call from the doc saying the results were in and they wanted us to stop by to discuss the results.  We were prepared for a brief education on anemia and to walk out with a RX for iron supplements.  

 

So, LB took Aidan and Ryla.  They were gone far longer than I expected.  I finally got a 

call saing that I needed to come because the doc had some concerns.  The first thing 

the doc said when I got in the room is, "Well, I don't think it's leukemia."  excuse me?  I 

didn't even know that was on the table.  We found out that her red blood cell count was 

about 65% below the bottom of the normal range.  We were tole that they would consult 

with a specialist and be hearing from them within the next couple of hours.  We were 

anxious to say the least.  We had enough time to get home, feed the kids, and lay them 

down for their naps before we heard back from the doc.  The word was to get Ryla to 

the hospital ASAP.  

We sprang into high gear to find someone to watch Aidan so we could head up to the 

hospital.  We hurried as fast as we could to get to the hospital so we could was for 8 

hours before they started doing anything.  Once we got there and we're checked in we 

met with a med student, the hematologist, and a pediatrician. When we first got there 

they talked to us about blood transfusions, genetic disorders, IV iron treatment, and 

lesions in the brain.  The decision was thankfully to go with Iron treatment, assuming 

that her anemia was caused by iron deficiency and not some scary disease.  So, little 

Ryla was given an IV.   Which went well, until they forgot to prepare the tap and IV 

locks.  So I had to hold Ryla in a should lock for 10 minutes so she didn't pull the IV out 

while they got their supplies. Once that was done we waited another 4 hours to get the 

iron treatment started.

So, we got to the doctor's office around 10:30 that morning.  Made it to the hospital by 

1:30.  Had the IV placed by 5:30.  and started her first iron treatment at 9:00.  In the 

midst of all this Noah was with us.  We were placed on the pediatric oncology wing- 

which was a little unsettling.  After the IV was placed Noah unleashed one of his gut 

wrenching coughs. Within 5 minutes we were told that Noah and Aidan were not 

allowed back.  So that meant LB was unable to spend much time oat the hospital with 

us.  After she left, Ryla and I began a 2 day marathon of cuddling that was only 

occasionally interrupted by visits from an occupational therapist to check her gag reflex, 

a dietician to learn about her diet and evaluate her weight gain, and a painful to watch, 2 

hour test to see what happened in her tummy whenever she ate.

  

Our 2 and a half days taught us a lot about what was going on with her little body.  We 

learned that her tummy never recovered from the stomach flu she had in January, which 

was the cause of her vomiting.  This made it hard for her to process and odor nutrients.  

Thankfully this is easily treated by 2 months worth of antibiotics, taken before each meal 

and at bed time.  We also learned that she is most likely allergic to something she eats 

frequently- probably lactose or gluten.  This will require more testing and experimenting 

to determine the real cause.  Whatever it is, it is causing microscopic blood loss in her 

GI track, which led to her low red blood cell count.  This leads to the last thing we 

learned, which is she needs a lot of iron.  So we'll be supplementing that per the next 

few months. She's also supposed to eat as much physically possible and drink as much 

Pediasure as she can stomach to out some weight on her little frame.

So now we are going forward to try to get our little princess as healthy as possible. We 

are hoping and praying that the follow up lab work will confirm what the docs suspect at 

this point.  With som grace, we will see her fiery personality return in the weeks to 

come, along with a little extra chub on her belly- and if we're lucky a few words!     

     

Jesus in our Hearts

Conversation with Aidan tonight during bedtime.

Aidan: Is Jesus at our church?
Mom: Yes he is at our church but really he is with us everywhere because he is in our heart.
Aidan: Well I need to take him out so my tummy doesn't pop...
Mom:  Well having Jesus in our heart just means he is always with us.
Aidan:  Well Mommy, I didn't swallow him so how did he get in there?
Mom:  Let me go get your dad.......

Aidan and Ryla

Aidan and Ryla are playing together more and more everyday.  I LOVE to watch them play.  It also makes my life so much easier!!!!  They continue to get along great and I can only hope that this continues.  I snuck up on them this morning but they both eventually saw me and played it up for the camera a bit but that was fine with me!!

Aidan saying names

I don't know what it is about hearing your child say his name and mommy and daddy's name but I sure do think it's cute!!

Hide and Seek

Our little girl continues to have loads of personality.  Here is a glimpse of that.

Noah at 3 Months

Our little guy is already 3 months old.  He continues to be a very easy going baby.  Everyday he is smiling more and more and we are beginning to see bits of laughter as well.  It is hard to think that Cliff and I are officially out of the newborn stage for good.  We will miss it but it also comes with a lot of positive aspects as well.  I was looking back at previous posts of Aidan and Ryla and realized that we just don't get to spend near as much time with Noah as we did with the two of them which is so sad.  We try, however, to make the most of it whenever we can.  After Aidan and Ryla are down we will sit with Noah and get quality time with him.  He livens up so much when he is getting both of our attention at once.  Each of our kids have had something about their personality that I will always remember as their most precious quality when they were babies.  Aidan it was his laugh, Ryla her overwhelming cuteness and for Noah it is definitely his smile.