Ellie's Story

Ellie's Story

As most of you know, our 20 month old Ellie has had quite a lot happen to her (and to us) in the past couple of weeks.  I’ve given little updates on facebook but that is far from telling the entire story of what’s been going on with her.  Also people have asked me, “Was she previously healthy?”  “Did you see signs that anything was wrong prior to her having a stroke?”  so I’d like to back up and tell her story from the beginning.

Starting when Ellie was still in my belly, the doctors have monitored her for problems deemed to be minor and not likely to cause any issue.  In utero she was monitored for hydronephrosis (enlarged kidneys) but by the time she was two months old she had an ultrasound that indicated the problem had corrected itself.  At two weeks old her pediatrician indicated that she had a heart murmur and referred us to a pediatric cardiologist.  The cardiologist found that she had a PFO which is a small hole in the heart that actually a good amount of the populations have naturally and usually poses no problems.  The cardiologist also found that she had a small amount of thickening of the aortic and pulmonary valves but that her heart was functioning normally and so he just wanted to keep an eye on things to make sure that it didn’t ever become an issue.  Obviously as a parent these things felt concerning to us but the doctors reassured us that she was fine and these were minor things that would likely never pose a problem.  

Since about 3 months old, Ellie has had days (and sometimes weeks) were she has been incredibly unhappy.  Days where they will cry all day and night.  I had taken her to the pediatrician many times because I just didn’t know what was wrong.  I always figured they would find that she had an ear infection or something but generally her pediatrician had been unable to find anything wrong with her.  Because he could find nothing wrong with her, it was believed that she must have stomach problems.  So we tried all kinds of different diets with her in an attempt to figure out what foods might be bothering her stomach.  When she was really little she had blood in every stool which we finally discovered was a result of her being lactose intolerant so that seemed to fit with the theory that she must have stomach issues.  Unfortunately no diet we ever tried seemed to really help things.

One evening this past January, we were getting Ellie ready for bed when her lips suddenly turned dark blue for no apparent reason.  It was startling to us and the next day I took her to the cardiologist.  The cardiologist did an echo of her heart and said it was functioning perfectly.  He said he didn’t know why her lips turned blue.  We were told just to dismiss it as one of those strange, unexplained occurrences.  

So other than an episode where her lips turned blue and her fussiness, there was no indication that anything was seriously wrong with her.  Just like her older sister, she was a little slow to meet her milestones at first but by 18 months old she was completely caught up and showing signs of even being ahead on some milestones.  She appeared to be a perfectly normal 20 month old--- healthy, active, and smart.

The morning of Tuesday, July 22 started out like most mornings around here.  I rushed to get the girls and I ready for the day and then left the house to drop Payton off at preschool.  After we dropped Payton off at school, Ellie and I went to the grocery store to get food for the week.  At the store, Ellie sat in the shopping cart right in front of me.  She pointed out items she knew the names of like “Nanas” (bananas) and “Boon” (balloons) and we played peek-a-boo and laughed together.  The car ride home takes a total of about 3 minutes and there was no indication that anything was wrong. 

 

When we got home, I got her out of her car seat and carried her into the house like I always do.  I then stood her up on her feet, expecting her to walk off and find a toy to play with.  Instead she collapsed to the ground, crying.  I thought to myself, “Wow, this is a lot of drama, she must be really tired or something”.  So I lifted her back up and again put her on her feet.  Once again she collapsed and was crying even harder.  I still didn’t realize anything was truly wrong so I said, “I have to bring in the groceries so you sit here and watch Signing Time” (her favorite DVD) and I put her into the sitting position and turned Signing Time on.  Instead of staying in a sitting position, she again flopped forward onto her stomach and continued to cry.  The fact that she didn’t care that her favorite show was on TV definitely set off the warning alarms and made me realize this might be more than her just being tired and dramatic.  I went to the kitchen and got some fruit snacks and said, “Ellie, want some candy?  Come here and I’ll give you some candy”.  She was lying on her stomach crying and she kept trying to get up but she couldn’t.  I put her on her feet and then backed up to encourage her to walk to me to get the candy.  She was able to take a couple of steps and then fell forward.  I then carried her to the table, had her stand holding onto the bench, and gave her the fruit snacks.  That’s when I noticed that her left arm was hanging completely limp by her side.  I tried to get her to use that hand to get the fruit snacks but it just appeared dead.  At this point I called Charles, who was at work, and explained what was going on.  His advice was for me to take her to the ER immediately.

A lot of thoughts went through my head on the way to the ER.  Part of me was really scared because I felt like there was something really wrong with her and the other part thought there was just no way something could be seriously wrong with her and that maybe her initial fall had dislocated her shoulder or something.  When I got to the ER, I parked in the drop off location and rushed her instead, telling the front desk lady that I felt something was really wrong with my baby and therefore couldn’t go park my truck in the parking garage.  When they checked us in and they asked me what was wrong, I told them her arm wasn’t working, that it was completely limp.  So, they triaged us as a child with an injured shoulder and everyone who entered our room was expecting to be dealing with a shoulder injury.  Only the thing was, Ellie couldn’t even sit up independently.  She literally couldn’t even hold her head up on her own.  Her head and body would flop to her left side anytime they weren’t supported.  She was crying the majority of the time but also couldn’t seem to keep her eyes open.

Once they had asked a million questions and realized this didn’t appear to be a shoulder issue, they performed a CT scan on her head.  They also sent the PICU doctor to see us and he said, “Not being able to move your arm is not normal and it’s not a good sign”.  After the CT scan, they tried numerous times to get an IV into Ellie but after jabbing around on both her hands, both her arms, and both of her feet, they were unsuccessful.  This was incredibly hard to watch because I knew how painful it must be for my baby.  

The CT results showed a large area on the right side of her brain that the radiologist reported to be “atrophy” and what the PICU doctor believed to be “gliosis” (old scarring).  The PICU doctor explained to us that anything could have caused this--- that it could have occurred in utero or maybe the result of a head injury at some time.  The doctor’s theory was that this old scarring may have triggered Ellie to have a seizure that must have occurred during the 3 minute ride home from the store.  He said this was obviously just his guess on what had taken place and he wanted to do an MRI which would give a much clearer picture of things.  The problem was, with no IV they couldn’t sedate Ellie in the way they deemed the safest.  So we were placed in PICU (pediatric ICU) for the night and told they would get anesthesia to work on the IV and perform the MRI the next day.  

Wednesday they were able to perform the sedated MRI on Ellie.  Having your baby go under anesthesia is a scary thing (we had no idea just how scary until a few days later!) but she did fine.  Early that evening we were back in our PICU room when the PICU doctor came in and said, “Give Ellie to the nurse, I need both of you to come into my conference room.  I have bad news”.  My stomach dropped.  This was one of the worst and scariest moments up to that point in my life.  When your child gets MRI results back and the doctor says, “I have bad news” your mind immediately goes to the worst.  The doctor then started with, “This isn’t cancer, it’s not a tumor, but it appears your daughter has some type of rare, neurological disease.  And we don’t know what it is.  It could be MoyaMoya, a disease we have a little experience in dealing with, or it could be any number of rare diseases.  It could be something with treatment options or it may be a progressive disease with no options.  In these type of situations I can’t tell you what I would do if this were my own child because that hits too close to home, but if your daughter were my niece and I were giving advice to members of my own family, I would say you need to go to Texas Children’s Hospital where they have specialist who have experience with these type of rare diseases”.  

So the decision was made to have us transferred that night to Texas Children’s Hospital in Houston.  When they told Charles that Galveston EMS would transfer us, he sent a text to our friend Joe who is an EMT and asked, “You working tonight?”  To which Joe said, “Yeah, are we transporting Ellie?”  So Joe was able to put in a request to be the one to transfer us.  It was definitely nice to have a friend ride in the back of the ambulance with me and to talk and take my mind off things as we drove to Houston.  They strapped Ellie’s car seat to a stretcher and she slept in her seat on the ride to the hospital.

Once at Texas Children’s we were placed in a room in the Progressive Care Unit, which is a unit in between a regular room and PICU so that the patient is monitored closely but not quite as intensive as PICU.  We met with doctors late into the night.  A neurologist looked at our MRI and came in and said, “I see from the MRI that your daughter has had a stroke and older strokes too”.  And we were like, “No, we don’t think she had a stroke.  UTMB thinks she had a seizure, they assured us she didn’t have a stroke.”  To which she said, “Ok well it looks like a stroke to me and I conferred with another neurologist who also thinks she had a stroke but I will see what radiology says”.  

The next day the chief of neurology met with us and said she had looked at the MRI and so had radiology and Ellie had most definitely had a stroke and had signs of having had other strokes in the past (possibly in utero since we insisted she had never shown signs of any type of weakness before this).  She then scheduled an MRA for the next day which is an MRI where they inject dyes into the brain to get a better look at the blood vessels.  The sedated MRA went fine.  

When the results were in, the neurologist and an entire group of doctors and residents, met with us and told us, “We have a diagnosis, your daughter has Moyamoya disease”.  She showed us the MRA pictures of Ellie’s brain.  The left side of her brain had normal blood flowing through the arteries but the right side there was nothing.  No blood going through the arteries.  With moyamoya the arteries close themselves off.  In an attempt to compensate for this, the body creates new tiny, tangled vessels (the word “moyamoya” is a Japanese term meaning “puff of smoke” which is how these new vessels appear on an MRI) but these vessels are too small to transport blood efficiently which is why people with moyamoya then start having strokes.

The neurologist explained that the treatment for Moyamoya is brain surgery to help revascularize that side of the brain.  I asked based on Ellie’s MRA what she felt her prognosis might be.  And she told me, “To be completely honest, all the arteries I would be concerned about closing off are already completely damaged.  Looking at this MRA I would say your daughter should be severely impaired.  And yet she isn’t.  Her young brain has created new pathways to compensate and she is functioning normally.  Therefore I would say she has a good prognosis.”  

Late that night (these people work crazy hours!) the neurosurgeon came by to talk to us for the first time.  Dr Lam explained again about Moyamoya and about potential surgical options.  She let us know that she wanted to perform an angiogram either Friday or Monday.  She explained that with the angiogram Ellie would need to be sedated and they would be sending a catheter up through her vessels which poses a small risk of dislodging a new clot and causing another stroke.  The angiogram would allow her to get an even clearer picture of Ellie’s arteries prior to surgery.  

The angiogram didn’t take place on Friday so they told us they would be moving us to a regular room on the neurology floor for us to just hangout for the weekend.  The weekend felt pretty long.  Ellie wanted to be constantly active but they had her on IV fluids so it was difficult to keep up with her while also pushing her IV pole around.  During the week there are volunteers who open up a playroom for the kids but not on the weekends.  So we took many walks down the hall to see the fish in a fish tank and to let her play on some toy cars and bikes they have for kids to ride in the hallways.  Thankfully our nurse, Angela, was wonderful and encouraged us to also take her to the next building over to see the model trains and for a couple of short visits to the playground (which unfortunately was miserably hot with little shade and no breeze).

Monday arrived and Ellie had to suffer through yet another day of having nothing to eat or drink.  I know my baby lost some weight through this entire ordeal and she didn’t have any to lose to begin with.  I had no idea that this Monday would stick in my mind for the rest of my life.  The angiogram went well and once Ellie had woken up in recovery they allowed Charles and I to be with her.  Ellie pointed at us and said, “Mama, Daddy!  Mama, Daddy!”  She was clearly alert and happy to see us.  The nurse then gave her an apple juice which she sucked down.  Both neurosurgeons were there and they started discussing with Charles and I the results of the angiogram.  The nurse left the room and I stood at Ellie’s side while listening to the surgeons.  Suddenly Ellie looked at me with this really blank look on her face, stuck her tongue out and stopped breathing.  I grabbed her and sat her up but she didn’t breath.  I yelled, “She’s not okay!  She’s not okay!”  The surgeons and Charles ran over.  Ellie’s face started turned really white.  Her oxygen monitor started alarming and her oxygen level dropped to 54.  The nurse ran in from the other room and yelled at me to “Move!”  I stepped back and she grabbed the bag resuscitation devise, placed it over Ellie’s face and started giving her breaths while saying, “Ellie breath!  Breath!”  Thank the Lord after just a few resuscitation breaths, Ellie started to breathe again on her own. 

She then seemed okay again and although we were shook up, we were relieved that she was okay.  About 30 minutes later, Ellie got upset about something and started to cry.  But she cried out several times and didn’t take a breath in.  Her oxygen plummeted to about 70, the nurse told her to “Breath!” while massaging her chest and thankfully she did start breathing again without needing to be resuscitated.  Another 30 minutes past, she got upset again and exactly the same thing happened, again with her regaining her breathing with encouragement.  The doctors then put in orders for Ellie to be transferred to PICU for the night.  Charles and I were very rattled after seeing our baby stop breathing and so we spent the majority of the night just staring at her, watching her breath in and out.  Plus there is no place for a parent to rest in a PICU room anyway.  

By morning we were relieved that Ellie had made it through the night without any other issues but we were very scared about the brain surgery she would need to have on Wednesday and the possibility of this happening again when she went under anesthesia.  They decided to keep Ellie in PICU until her surgery and for her to return to PICU after her surgery.  

PICU at Texas Children’s Hospital is pretty much the saddest place on the face of the earth in my opinion.  It is massive--- tiny hallway after hallway, with little rooms all filled with two patients per room.  Full of very sick children, all crying and screaming in pain or in fear.  Parents are welcome to stay with their child but there is no place for them to rest, just a couple of chairs to sit in.  And then if you need anything, such as to use the restroom, you have to find your way through the maze of tiny hallways…. past all the sick screaming children….. to a door that locks people out, through a washroom, through another door, through another small hallway, through another door, through the family waiting room, through a final door, and out to the main hospital and visitor waiting area.  I still pray for our roommate while we were there…. A young boy of maybe 12 years old on life support.  

The second day we were in PICU, after not having slept in many, many hours, the nurse asked me if I thought Ellie would sleep better next to me in a regular hospital bed instead of the hospital crib they had assigned to her.  I had no idea this was even an option otherwise I would have requested it nights ago.  So once they got us a regular bed, Ellie and I were set and were finally able to get a little sleep.   I would lie next to Ellie and prayed over and over, “Please God don’t let me lose her.  Don’t let me lose any part of her.  I adore the person that she is and I’m so scared of losing her, of losing any part of who she is”.  The fear about her upcoming brain surgery was gripping but I could also feel all the prayers being lifted for us and they gave me a strength I never would have had on my own.  I was more terrified than I have ever been in my life and yet I had many moments of feeling peace that everything was going to be okay. 

Wednesday, a little over a week after all of this began, was the big day for her brain surgery.  We were very concerned, especially about how she would react to anesthesia, but we knew she absolutely needed this surgery so all we could do was put our trust in God and trust in the surgeons and anesthesiologist.  Every 30 minutes or so during surgery we would get a call from the nurse and I would absolutely panic but every time it was the nurse saying that everything was going just fine.  After about 2 hours, one of the two neurosurgeons came out to meet with us.  Again I was so afraid it would be bad news but he said he was finished with the dural inversion and that everything had gone well.  That Ellie had needed a blood transfusion during the operation but that was to be expected.  And that the other neurosurgeon was closing her back up.  Probably an hour after that we were called back to see her.  While we were so thankful the surgery had gone well, we were still scared because recovery was when Ellie had stopped breathing during the angiogram.  We walked in and she looked so pale and little lying there.  She opened her eyes and in a very hoarse voice said “Mama, Dada”.  She started to get upset so the nurse had me pick her up and hold her.  She had bandages over the incision area and a hat on top of the bandages.  We told the nurse how scared we were that she might stop breathing and she said, “Well this is the place to be.  We deal with that at least once a day, sometimes several times a day so we’re prepared for it”.  Thankfully Ellie did just fine and after about an hour we were taken back to PICU.

Ellie was in pain throughout the night and all they would give her was regular infant Tylenol.  They said they don’t like to give narcotics right after neurological surgeries.  It was so hard to see her in so much pain.  She would try to sleep but every 10 minutes or so she would wake up crying and hyperventilating.  At one point I asked if they would give her IV Tylenol instead since my dad said it’s more affective and they did but said insurance wouldn’t approve more than 1 dose of it because it’s expensive and she’s capable of taking regular Tylenol.  The next day she was in pain and had no interest in eating.  The few bites of cereal that we convinced her to eat came right back up.  Other than the pain and nausea she was stable so by afternoon we were moved out of PICU and back to the neurology floor.  Once on the floor they had zero issue with prescribing a hydrocodone medication and by dinner she was clearly in much less pain and was able to keep down some peas that she ate.  Unfortunately before bed her stomach was upset again and she vomited up a few grapes we had given her.  

We stayed 4 days after surgery for her to recover and thankfully they were fairly uneventful days.  A couple days after surgery Ellie was up walking and playing.  Occupational therapy and physical therapy both came to evaluate her and work with her.

On Sunday, a little less than 2 weeks after this all began, we got to leave the hospital and go home.  We are so thankful to be home and so thankful that Ellie is doing well.  We attribute Ellie doing so well to all the many, many people who offered up prayers on her behalf.  We are so grateful to everyone and for all of the support we have been given.  Today marks two weeks since Ellie’s stroke and tomorrow will mark a week since her surgery.  We still have to give her pain medications around the clock (she even wakes up at night in pain) but as long as we keep up with her medications she seems comfortable.  We are waiting on a call from occupation and physical therapy so we can get her started in an outpatient program through UTMB.  The main lingering affect she has from her stroke is that she still doesn’t have full use of her left hand.  We have also noticed that her walking is incredibly slow and aren’t sure if that’s just because she’s still sore from surgery or if it’s a neurological affect.  But overall she is doing great!  We will visit her neurosurgeon in 1 1/2 weeks to check on the incision and then in probably about 6 weeks we think she will have another angiogram to see if the revascularization is starting to take place.  And also at that time she may undergo surgery on the other side of her brain.

There are times when this all still seems so surreal.    You don’t ever think your perfectly healthy baby could suddenly suffer a stroke and be diagnosed with a rare neurological disease.  Two weeks ago if someone had suggested that my healthy, smart 20 month old could have a brain disease that had already permanently damaged over 1/3 of the right side of her brain, I would have said they were absolutely crazy.  But the thing with little ones is that their brains are constantly changing and remapping themselves and until the stroke her brain had fully compensated for the damage done to it.  Her diagnosis explains the only symptoms she previously had---- blue lips because her brain wasn’t getting enough oxygen and it’s likely the fussiness was in response to headaches she was getting since that’s a complaint that most people with Moyamoya have.  There is no cure for Moyamoya.  It is something she will always have and will need to take certain precautions, like taking Asprin every day to prevent a stroke, but thankfully if these surgeries work she should be able to live a long, normal life.  Unfortunately they don’t work immediately because it takes several months for the revascularization to take place.  So if yall would, please continue to pray for Ellie who remains at an increased risk of having a stroke and who still has to undergo one more major brain surgery in the fairly near future.  We have seen the power of prayers and we are so thankful that our Ellie is doing so well now.  Thank you all and thank God for our little miracle!

January & February Update

I’m late on this!   Ellie is now 15 months old but here is what she was doing at 14 ½ and later in this blog entry at 15 months old:

 

 So at 14 ½ months old…

Height: 29.5” Weight: 21lbs 9 oz
I think this puts her in the 30% or so for height and weight. A little perspective, this is the height and weight that Payton (who remains in the 90% for height and 66% for weight) was at 9 months old.
Wears: 12-18 month clothes, size 3 diapers, size 4 shoes
New things she can say: “Wah-wah” for water or for anything she wants to eat, “Bee-Bee” for baby or for other random things.
Sometimes signs “All Done” and attempts to sign “Ball” and “Water”. Can sign “More” but doesn’t sign it when she wants more of something.
Can pull up on everything now and has started walking while holding onto things. She can now let go and stay standing for up to a few seconds. She also lets go and tries to walk to us but as soon as she tries she falls face first (usually into our arms unless we aren’t there to catch her!)
Pretends to blow her nose on random things, fake coughs into cups/toys, grabs her toes and screams to indicate that she wants me to play “This little piggy” with her, likes to play peek-a-boo, likes the song “If You’re Happy and You Know It”. She is very silly and fun.
She wants to read book after book. She grabs a book and starts screaming as she bum scoots on over to me. Her favorite books are the Highlights magazines, Biscuit books (about a dog named Biscuit), and any book with animals. She now can find and point out a few items like dog, cat, ball, bird, and fish.

Ellie UTI Update

Despite concerns that she had an antibiotic resistant UTI, the Augmentin did the trick and got rid of the infection.  So we are very thankful for that!  We are hoping this was just an isolated incident but we will attempt to keep a close eye on her to make sure she doesn’t get recurrent UTIs.  Unfortunately since she didn’t give clear signs that she had an infection the last time, it’s hard to know what to look for.  I mean, does waking up crying every 30 minutes indicate a UTI or is that just her???  I’d hate for it to get to the point that she’s hyperventilating and her heart rate is through the roof just for us to know that she has another UTI.

 Ellie Heart Update

We had another health scare with Ellie the last week of January.  She was playing with Payton and when I picked her up to get her ready for bed I realized that her lips were a dark blue color.  Almost navy in color but her lips weren’t solid blue, more like patches of blue.  Charles was also in the room and I pointed it out to him.  Then we watched as her lips gradually changed back to normal.  She was also breathing really fast but we knew that could have been because she and Payton were playing so hard.  It was pretty scary because immediately your mind goes to the worst--- which is that I immediately feared it was due to the heart abnormalities that Ellie has seen a pediatric cardiologist for since she was 2 weeks old.  The next day I got her in to see her cardiologist.  Poor Ellie, who has had 3 catheterizations done in the past 2 weeks and is not feeling very fond of doctors and nurses at this point, was not a very cooperative patient.  In fact she screamed and cried constantly during the entire appointment and nothing, not suckers or stickers or videos, would make her stop crying.  I’m actually surprised they were able to do an echocardiogram on her because of it, but they did.  And thankfully the doctor said her heart is functioning just fine and actually looks a lot better than the last time he saw it.  That she still has some mild thickening of the pulmonary valve but that the other valve looked good and that the PFO (small hole in her heart) had actually closed itself completely.  He said, “I’m sorry but I don’t know why her lips turned blue because her heart looks good”.   This was great news!  Although we still have no idea why her lips turned blue.  Hopefully it won’t happen again!  This child has been giving us some scares lately but thankfully she is overall a healthy little girl!

Payton Update

I’m always updating about Ellie because babies grow and change so much but so do 3 year olds actually so here is a 3 1/3 year old update for Payton.

Height:  39.75” (90%)

Weight: 33 lbs 6 oz (66%)

BMI: 14.86 (26%)

Yes once they outgrow measuring the head circumference they apparently start calculating BMI instead.  Payton, who used to be a tall, chubby baby, has now become a tall, thin little girl.  It’s still hard for me to believe she actually is a little girl now.  The past 3 1/3 years have flown by.

Clothing size:  4T and even fitting into some 5T clothes

Shoe size:  9 .5

Reading:

At 3 1/3 years old, Payton is now reading many three letter words on her own.  She knows all of her letter sounds and can sound out basic words.  I didn’t even realize 3 year olds could learn to read but she just started picking up on it so I started working with her on it.  We have these foam letters that stick on the bathtub and I create words and then see if she can sound them out.  The other night I created 16 random, 3 letter words, and she sounded out and read 13 of the 16 words correctly without help.  She then asked me, “Are you so proud of me?”   And the answer is Yes, I am so very proud of her!

Favorite books:  Payton has many favorite books but books she has been really into lately have been….

·         Olivia books

·         Pinkalicious books

·         Care Bears books

·         Highlights magazines

After really enjoying books about trains and animals for so long, Payton has just started becoming interested in books that seem a little more “girlie”.

Winter Show and School Update

On the evening of Thursday, January 30, 2014, Payton had her first school performance.  The 3 and 4 year old class sang a couple of songs first and then Payton’s class (the 2 year old class) sang two songs with them.  They sang the “B-L-U-E Spells Blue” and “I’m a Little Snowman” songs.  And yes Payton is in the “2 Year Old” class this year because they go by the kid’s age on September 1, which is how the public schools in Texas do it too because you have to be 5 on September 1 to start Kindergarten.    And on September 1 of this past school year she was still 2.  This means, with an October birthday, Payton will always be one of the oldest in her class.  But actually her 2 year old class at school has several others will fall birthdays too so she isn’t even the oldest in her class.

Payton has really been loving her first year of preschool.  She attends school two days a week for 3 hours and looks forward to those days.  She has the sweetest teacher.  She tells me her best friend in her class is a little girl named Myar and her favorite thing to do at school is to ride scooters outside. 

Cold Weather

In January we had a couple of strong cold fronts.  For both cold fronts they cancelled school in Galveston because of the threat of freezing rain but no ice actually accumulated on the roads for either cold front. Charles was still able to commute to work in Houston and so it didn’t affect us the way they thought it would.  I think some places, particularly north of Houston, did get some significant ice/snow but not here.  I posted some pictures on my facebook page poking fun at how extreme everyone was reacting to the weather but instead of laughing, people seemed to have taken me seriously.  Clearly cold weather is not a joking matter in Southeast Texas.  But seriously, cancelling school because the forecast calls for it to get down to 34 degree and well, that’s pretty close to freezing and entirely too cold for anyone to be in school, right?  On one of those almost freezing days I took the girls to the grocery store because we needed food.  I had the girls bundled up in a couple of layers and an old man, in a t-shirt, came up to us in the store and said, “You shouldn’t have such little girls out in this weather”.  I was very nice about it but some people definitely need to mind their own business.  My family needs to eat whether it’s cold out or not.  Plus the day before, when it was sunny and 70, I opted for the girls and I to spend the day at the park rather than in the grocery store and I don’t regret that decision one bit.

So, despite all the cold weather, Payton still hasn’t seen snow in her 3 years of life.  I asked her, “Do you know what snow is?” and she told me, “Yes, you skate on it”.  Well, that’s ice but close enough!  We did get some sleet and when she thought it was snow I allowed her to believe it was…..  Once again, close enough! 

Lala and Papa 

The last weekend in January, Lala and Papa (my parents) were able to come visit for a weekend.  Payton enjoyed showing them her new trampoline.  We also played a round of Putt-Putt that I think my mom won (I just know it definitely wasn’t me--- I’m pretty sure I got last place!)  and then we ate lunch at Jimmy’s on the Pier.  Their dog Baby stayed at our house while my parents stayed in a hotel and each morning Payton would tell them, “I took care of Baby for you”.  Payton showed my parents how she knows how to work the remote control to our DVD player on her own and Lala said, “Oh, Papa and I don’t even know how to do that!  Will you come to our Georgetown house to fix our DVD player for us?”  So throughout the weekend Payton would tell Lala, “Don’t worry Lala, I’ll come fix your TV for you”. 

February 2014

During the second weekend of February we had a strange event take place one evening where a couple of people tried to enter our house while we were home.  I was in the shower when I heard Charles yelling at Payton to, “Go to the bathroom with Mama!  Go right now!”  I didn’t know what was going on.  But apparently some people opened our screen door and were starting to mess with the door knob when Charles ran across the room and locked the front door.  The people then got in their car and drove away.  Because of the way they didn’t leave quickly and had parked in the driveway to begin with, we have a feeling they weren’t trying to cause trouble but were probably confused and had the wrong house.  But, to have someone try to get into your home at night is still a bit unnerving and we did call the non-emergency police number to report the incident.  

Valentine’s Events

The Wednesday before Valentine’s Day we attended a Valentine’s play date at our friends Cristal and Skyleigh’s house.  It was so cute to see the girls (yes, it was all girls and one baby boy in attendance) all dressed for Valentine’s Day.  And Cristal had prepared some really cute crafts and snacks for the kids.  

On Valentine’s Day, Nana (Charles’ mom) came to visit and brought lots of treats for us and the girls.  Charles and I never used to celebrate Valentine’s Day.  It just seems like a silly holiday and when you’re single it’s the kind of day that just makes you want to puke so I think we both hold some resentment towards such a puke-worthy holiday.  We do, however, sometimes talk about the year we both came down with an awful stomach bug on Valentine’s Day that we dubbed the “Valentine’s Day Massacre” but otherwise we generally ignore the holiday.  But, with our girls, I just can’t resist the excuse to dress them up cute and take pictures.   Plus Payton is at the age where she now has expectations that something good will happen on Valentine’s Day.  This year, in the days leading up to Valentine’s Day, she kept mentioning that maybe for Valentine’s Day she would get her own watch.  So, Charles ended up getting her a watch and a train whistle and he got Ellie at tractor toy.  Because those are kind of unique Valentine’s gifts for little girls, I posted about it on Facebook and Charles responded with, “Be my Valentine’s?  Woo Wooooooo!”  which I thought was funny.

Nana Visit

As I said above, Nana was here for Valentine’s Day and stayed the week.  Charles had off for President’s Day so we took the girls to the Houston Zoo.  Nana had things she needed to get done at her beach house so she didn’t go with us but she came over that evening for dinner.  She had brought Payton so many presents this visit that when she came over Payton asked her, “Do you have a present for me?”  Nana told her, “No, I’m sorry but I don’t today” to which Payton looked sad so she told her, “Don’t be sad”.  Payton then said, “I’m not sad, I’ve just had a long day”.  LOL 

We like to tease Payton and call her Payton “Mayonnaise” because that’s what she calls Payton Manning.  We like to say things like, “Wait, are you Payton Mayonnaise?!”  To which she responds with, “No, I’m not Payton Mayonnaise!  I’m Payton Falgout!”  Well one of the mornings that Nana was in town, Payton was talking to Siri on my iPhone and every time Payton would tell her that her name is Payton, Siri would call her “Bacon” instead.  So we have started to joke around with Payton by calling her Bacon Mayonnaise, which frankly makes me a bit hungry each time I say it!

Mardi Gras

This past weekend was the first weekend of Mardi Gras.  The 1^st weekend is always a big weekend for us because the two biggest parades of the weekend come down Seawall by our house.  The weather was warm and sunny and just perfect.  The first parade we attended was the noon Krewe of Aquarius parade.  This year they extended the Seawall parade routes to not only go down Seawall but to also then go to the Strand.  That’s a 4 mile parade route!  (And most of these kids marching in the bands participated in both parades so they walked, danced, and played their instruments for 8 miles on Saturday!)  So, possibly thanks to the long route, there weren’t too many people standing around us for the parade.  Which meant every single float that passed noticed Payton and threw to her.  She caught tons of beads and 4 stuffed animals!  Ellie sat in her stroller and seemed to enjoy the parade as well.  Parts of the parade are really loud with fire trucks, marching bands, blaring music so I never know how my girls will react but to date they have always seemed to enjoy the parades.

Around 4 some of our friends (the Andersons, the Gehrkes, the Bohlmanns, and the Hendersons) and my brother Kyle and his girlfriend Marissa came over.  We had pizza, drinks, and deserts and the kids had a little time to play together before heading to the parade at 6.  The kids again scored plenty of beads and other items.  The big hit of the night with the kids were these flashing light up balls and glow necklaces being thrown from the floats.  I’ve never noticed them throwing a bunch of the light up balls before but it was a genius idea, they loved them!  After the parade we came back to the house and spent some more time hanging out.  We had a firepit going in the front yard that especially the guys, and some of the kids, enjoyed sitting around.  

The next day (Sunday) we took the girls to the afternoon Children’s parade downtown.  On our side of town (by the Gulf) it was super cloudy and cool but downtown the weather was sunny and warm.  I had dressed the girls and I in longsleeves and we were literally sweating.  Got back home from the parade and it was still cool and foggy.  Amazing how just a couple miles further from the water makes such a difference.  The parade was small but Payton enjoyed it and it was nice to get away from the constant fog for a bit.  

The 1^st weekend of Mardi Gras so much fun!  It is always one of our favorite times of the year.  Let the good times roll!

Ellie’s 15 month update:

Height: 29.5” + Weight: 21lbs 9 oz +

Wears: 12-18 month clothes, size 3 diapers, size 4 shoes

 
New things she can say:  “Ba-be” for belly button (and she can show you her ba-be),  she whispers ”Eyessssss” and can point to my eyes, she uses the word “Be-be” to mean baby, Ellie, Payton, and bye-bye.  

She is getting good at being able to walk while holding onto things.  She can also stand herself up without holding onto anything and can stay standing for a few seconds at a time.  She has still yet to take her first steps.  Apparently 15 months is the cut off between what is considered “normal” in regards to walking and was is considered “behind”.  But she continues to develop and progress so at this point I’m not feeling concerned.  I do think she is getting close to taking her first steps and might do so in the next month but I don’t see her truly walking around for a while yet.

Because I keep getting asked the question, she is still not a good sleeper but overall we have all adjusted to her sleep pattern.  I have no complaints and don’t wish to receive any more sleep advice from well intending people.  ;)

Charles

I know I don’t normally write about Charles and I but some of our family knows that he recently went to MD Anderson for some testing due to the colon polyps that he has been having removed since he was a teenager so I thought I would give a quick update on it.  First a bit of background, when he was a teenager he started experiencing symptoms that caused a doctor to perform a colonoscopy where the doctor discovered he had colon polyps.  Since then he has had to have periodic colonoscopies to remove the polyps.  The polyps are adenomatous polyps which means although they are not cancerous, they have the potential to become cancerous if not removed.   Unfortunately in recent years the number of polyps that they have had to remove has increased.  Last year I think the doctor removed 12 and this year he had 18 new ones that needed to be removed and will have to have another colonoscopy (this time to be done at MD Anderson) in just 6 months.  So his doctor, not knowing what could be causing all these polyps in a young person, referred him to MD Anderson for genetic testing to see if it’s one of two known genetic mutations that can cause colon polyps.  Charles just got a call from them today letting him know that his testing came back negative for those genetic mutations.  That’s pretty much a good thing because the genetic mutations he was being tested for can be bad but what it likely means is that he has a genetic problem that they haven’t yet discovered (because even the 2 they tested him for were just discovered in the past few years).  The doctor who called him said they are waiting on FDA approval to study a few more genes that could cause colon polyps and they will be in contact with him in the years to come as those tests become available.  He underwent the genetics testing for a couple of reasons---- first to try to get a diagnosis for his condition so they’d have a better idea of how to proceed in the future with his treatment and second to know what to expect in regards to if our girls will eventually need to be tested for this disorder which appears to start affecting a person in their teenage years.  With the results coming back “inconclusive”, he will just proceed with periodic colonoscopies.  We are just grateful that his first polyps were discovered years ago and therefore his condition, whatever it may be, has been and continues to be manageable.

Conversations with Payton:

One funny thing I heard Payton tell Ellie after I gave her the baby from the King Cake:

“Ellie, you are too wittle to play with baby Jesus. You will try to eat him and he will make you sick and then you will throwed up. “

She then, 5 minutes later, lost the baby and we were concerned that Ellie would be the one to find it.  I ended up finding the baby later when folding laundry.  Apparently Payton had dropped it into the washer machine while helping me load it with dirty laundry.  Oh life with a 1 and 3 year old!  It’s fabulous and crazy all at once.

A more serious conversation with Payton about her Grandpa Chuck (Charles’ dad) who passed away 10 years ago:

Payton: "Are you making soup?" Me: "No, dirty rice." Payton: "Oh, Grandpa Chuck loves dirty rice." Me: "Yes he does. This is his recipe." Payton: "Yeah but he lives far away." Me: "Do you know where he lives?" Payton: "Yes, he lives in a house, but not close to us. I don't know where his house is."

We have told her before that he lives in Heaven with Dixie and Haven (our dogs) but as far as she is concerned Heaven is just another place far away like Albuquerque is far away.

2^nd Weekend of Mardi Gras

We had warm weather again for the second weekend of Mardi Gras.  I can’t remember another Mardi Gras where we had such nice weather for BOTH weekends.  I rented another camera lens (I’m trying to decide which lens I want to purchase) so Saturday morning I took some Mardi Gras themed pictures outside to try out the lens.  After that we attended the Krewe De Rosaire parade and caught some beads and a whole boat load of Moon Pies (that Payton loved) and candy.  That night was the big Knights of Momus parade.  This is the biggest parade at Mardi Gras Galveston and it always has just a completely electric atmosphere.  We always have so much fun at it and this year was no exception.  

The next day, Sunday, there were two more parades down Seawall by our house.  Our friends Christina and Brian brought us a Mardi Gras decorated cookie cake because they know how much we love cookie cake and attended the pet parade with us.  Ellie really got a kick out of the pet parade because she is fascinated with dogs right now.  Christina and Brian brought their dog China with them so both girls enjoyed petting and seeing her too.  After that we came back to the house so the girls could take a nap which meant we missed seeing the Childen’s parade which was okay because we’ve attended a lot of parades this Mardi Gras.

Ellie’s 1^st Steps

The morning of Sunday, March 2, Ellie let go of the bookshelf that she was holding onto and took a step in my direction on her own.  This was her 1^st independent step!  A couple days later she again took about 1 ½ steps towards me before sitting down.  She is very hesitant to try walking and just takes tiny baby steps before sitting down but this is definitely her showing some progress towards being able to walk!

Fat Tuesday

Unlike the two beautiful weekends we had for the Mardi Gras celebrations this year, Fat Tuesday was rainy and cold.  Payton had school in the morning and it was “Crazy Hat Day” so she wore her crazy jester hat along with her Mardi Gras shirt.  Reid, a little boy in her class, also wore a Mardi Gras shirt and crazy Mardi Gras hat.  Payton had a very fun day at school because, in addition to it being Crazy Hat Day, it was Emma’s birthday (a little girl in her class) and her mom brought the class pizza, cupcakes, balloons, and party favors.  I arrived at school to pick her up a little early so I got to watch (through the one-way window looking into the classroom) Payton and her classmates in music class.  The teacher would put on different songs and the kids had a blast dancing around to the music.  Payton looked like she was having so much fun.  She kept grabbing Myar’s hand to dance with her.

That evening I picked up food from Leo’s Cajun Corner (their chicken/sausage gumbo is amazing!) for dinner.  After dinner my friend Christina came over and rode with us to the Strand district for the Fat Tuesday Parade.  There was a light rain and the temperature was about 39 degrees.  I had dressed the girls and I in about 6 layers of clothes each (literally) but I managed to forget Ellie’s hat and Payton is the only one of the 4 of us who own mittens but I meant to bring Ellie some socks for her hands.  Charles gave his hat to Ellie and I took off my wool socks and put them on her hands.  So both girls appeared warm despite the weather (Payton later told me she was not just warm but hot for the parade).  Because of the poor weather there were very few people at the parade.  We watched the parade the first time at the very beginning of the parade.  We got loaded up with beads, stuffed animals, candy, glow balls, and other trinkets.  An extra-large strand of beads got thrown at Christina and actually hit her in the face, making her teeth really sore.  Thankfully she was okay and didn’t lose any teeth in the incident!  After the parade passed we then walked to the Strand to catch the parade a second time.  Again we caught tons of goodies.  In the 10 years that we have attended countless parades, we have never caught some many beads and other items!  And the quality beads we caught were also unmatched!  We were so excited and it was a great time despite of (or thanks to) the yucky weather.

I think that’s about it since the last time I updated this blog.  This afternoon starts spring break for most Texas schools so I expect this weekend and week to be a little bit crazy around here.  I will definitely make a mental note not to drive down Seawall, that is for sure!  Hope everyone has a good one!