Ellie's health scare

As many of you know, a couple weeks ago Ellie started having these episodes of rapid blinking.  This was very concerning to us and to her neurosurgeons because that was the only symptom she exhibited leading up to her major stroke last year.  Last year they couldn't explain the cause of the blinking but after her major stroke it was thought maybe the blinking had been TIAs (mini strokes) prior to her major stroke.  After her major stroke last year, she never once had a blinking episode until recently.  So when it showed back up, we called her neurosurgeon who had us drive to Texas Childen's in Houston that day for an EEG and appointment with her.  She didn't do the blinking during the EEG and the EEG showed no signs of seizures but we were told to put her back of the seizure medication that we had weaned her from over a month ago.  Her neurosurgeon was concerned enough to offer to admit Ellie into the hospital that night in order to get an MRA the next day to look at her brain.  Ellie just had an angiogram a couple of months ago where the blood flow looked great, so we told her we would rather just go home to monitor the situation and would consider an MRA soon if things didn't improve.

The next day Ellie came down with a virus that caused high fever, vomiting, a cough, and a runny nose.  I know every parent is concerned about their kids when they are sick, but I can tell you my concern level about Ellie getting sick is much greater than my concern level when my other two get sick.  The water, medicine, and formula we were putting into her feeding tube were oftentimes coming right back up and she had little desire to eat.  She had just had an appointment with the chronic care pediatrician and nutritionist the week before and had found that instead of gaining weight she has been losing weight for the past 6 months so this wasn't exactly what we wanted to be dealing with right now.

Fast forward a week later (this past Tuesday), Ellie was still sick and had gone days with very little calories staying down in her belly.  And she was still doing the blinking.  She woke up from nap screaming so I went in to get her out of bed.  When I tried to pick her up, her body was completely stiff and her back was arched.  It was very hard to carry her like that but I carried her into the kitchen thinking that if I offered her some Halloween candy or an iPad that it might fix the problem.  But no, she kept screaming, stiffening, and didn't respond to my offers.  I then carried her to the couch and tried to get her to sit on my lap to watch a video on my phone.  She continued to scream and arch her back so that she wasn't even able to sit.  Instead I stood her in front of me and held the phone out for her to watch.  She finally stopped screaming and started paying attention to the video.  While watching the video she kept swaying back and forth, almost falling but just barely catching her balance in time.  I held my arms out to surround her so that I could catch her should she fall.  She started to scream again, stopped and her body shuddered.  Then she took 2 steps forward and her body suddenly looked to go completely limp as she fell to the floor.

Now I am with Ellie pretty much every minute of every day and I see her fall a lot.  I see her lose her balance and fall.  I see her hyper-extend her knee because it's still weak from stroke, I see her trip over her toe because her stroke caused foot drop, and I see her throw herself to the floor because she's hurting or upset about something.  There are only two other times I have ever seen her body go limp like that and those two times were the strokes I watched her have.  So I immediately feared she had suffered another stroke.  I immediately started assessing her and I could see that her pupils looked okay and I didn't see any signs of facial weakness.  But her body seemed limp and I couldn't get her to sit up.  I was terrified and called 911 but told them I wasn't sure if she had suffered a stroke or if this was a seizure.

I picked Ellie up and started walking around trying to find my shoes and wallet.  A few minutes later I stood her up so that I could put my shoes on and noticed that she was able to stand and walk.  The EMS showed up and I was relieved to see that it was my friend Joe.  Joe tried to see if they could get permission to transport Ellie directly to Texas Children's Hospital but was told they were the only available unit and so they would have to take her to UTMB here in Galveston.  Payton was able to stay with our friend Emma who lives next door and Skyler came with us in the ambulance.  

At UTMB, Ellie acted herself.  They wanted to do blood work and get an IV going but after sticking her 4 times we agreed she would need to wait to get to Texas Children's for an IV.  Finally by evening Joe and his crew were given permission to transport Ellie to TCH.  At the TCH ER they too wanted to get an IV on her and so we explained that no one is capable of getting an IV in Ellie except for VAT team, the TCH specialized IV nurses who use an ultrasound machine to see the veins.  But the nurse insisted that she had to try before she could call VAT team.  It's heartbreaking to see your baby poked again and again.  They tend to insert the needle and then jab around for awhile trying to get it into the vein.  Then when they think they might have it, they try to flush it with water but instead of it going into the vein it infiltrates under the skin.  I've had this done to me before so I can tell you that IT HURTS.  And Ellie had already had this happen to her 4 times that evening and we weren't interested in putting her through it once again.  So Charles told the nurse, "You're not going to get it and when you don't you owe me $10."

The nurse didn't make the deal and stuck Ellie anyway and of course she blew the vein just like all the other nurses. So she called VAT team and when they showed up hours later, this nurse stood outside the only half closed curtain to our room and said, "Just a heads up, Dad isn't nice."  I can't help but wonder how nice she would be if in the past year her baby had been poked again and again and again, being put through all kind of unnecessary pain, for no good reason.  Unless you are God, you aren't getting an IV on this baby unless you have an ultrasound machine or she is under anesthesia.  Period.  And it's scary that UTMB, the hospital we have to go to in an emergency, are unable to get an IV in Ellie at all.

Thankfully the lady from the vascular access team was successful on the first try.  With an IV we could finally be given a room so we fell asleep around 4 a.m. By 5:45 a.m. the first doctor was in our room to start asking us questions again.  We were told they would do an MRI/MRA around 9 a.m.  We always have the concern of Ellie being put under anesthesia because of the risks she could encounter with her moyamoya disease but this time we had the added concern of her having an upper respiratory illness and an uneasy stomach.  Thankfully the anesthesiologist was reassuring about the illness not causing much of an added risk and she ended up having zero issues with the anesthesia.

Later in the morning, Dr Dauser (Ellie's neurosurgeon who invented the brain surgeries that Ellie has undergone) came to see us.  He had just viewed her MRA and you can tell he is really thrilled with the results of Ellie's surgeries.  He told us she had one of the most severe cases of Moyamoya disease that he has ever seen.  Her disease was fast progressing and left her with basically no blood flow to her brain.  But because her brain was so thirsty for blood, it took to the new vascular system immediately and now she has the best blood flow he has seen in a post-surgical Moyamoya patient.  Because of those results he felt like the episode I described was likely a seizure.  He mentioned possibly doing a 24 hour EEG but that it would be up to Dr Lam, Ellie's primary neurosurgeon.  

A little later the EEG technicians showed up to do another 45 minute EEG.  Thankfully Ellie had a blinking episode during the EEG and no seizure activity was noted on the EEG.  Having caught the blinking spells during an EEG, we didn't feel there would likely be any benefit to putting her through a 24 hour EEG so we requested to be discharged.  We talked to the neurologists who wants us to continue her current seizure medication and they said they would be in contact with Ellie's primary neurologist to get her take on things.  

So Ellie got discharged last night and we were glad to get home to sleep in our own beds.  We were also happy to get back to Payton who was thrilled to be able to see her daddy on his birthday.  She is still a little under the weather from whatever virus it is that she's had for over a week now but otherwise she seems back to herself.  I am beyond relieved that she didn't have a stroke and that she is doing well.  I am praying that whatever it was that happened Tuesday afternoon never happens again.  Unfortunately I'm pretty sure I will never stop worrying about Ellie and on weeks like this, that thought it especially exhausting.  Thank you all so very much for the prayers and concern.  It's reassuring to know of all the people who continue to pray for Ellie and to know that God is always in control.  

 

One year ago today

One year ago today I heard Ellie crying in her crib during nap time and when I went to check on her I knew immediately that she had suffered another stroke.

One year ago today I called 911 and told them my 22 month old had had a stroke.  I tried to stay calm while I asked them to "Please hurry!"

One year ago today I went into Payton's room and woke her up from her nap by saying, "Payton get up!  Ellie is very sick and an ambulance is here to take us all to the hospital!"

One year ago today I rode in an ambulance with it's siren wailing, Ellie crying and lying limp in my arms, and Payton sitting behind the stretcher that I was on, looking like the very scared 3 year old that she was.  One of the scariest moments of my life I managed to put a smile on my face and say to Payton, "Look at you riding in an ambulance!  So cool!"

One year ago today we waited for hours to be transferred to Texas Children's.  We held Ellie in our arms and watched her have seizure after seizure.  

One year ago today we found out that Ellie had suffered a stroke affecting over 3/4 of the left side of her brain.  We were told that she might get worse as her brain continued to swell.    

One year ago today we were shocked and full of questions.  How could this have happened when just a week earlier her MRI had looked so good???

One year ago today my daughter started her day with the ability to walk, talk, and use both hands and ended the day like a newborn who couldn't even hold up her own head, focus her eyes, swallow a sip of water or understand anything said to her.

One year ago today was the last time I heard Ellie say "Uh oh", "Payton", "Dada", "Water" and all the other words she knew at the time.

One year ago today we almost lost our sweet Ellie. 

One year ago today people from all over the world covered Ellie in prayers.  We could feel the waves of peace and comfort invading our overwhelming state of fear and chaos.  

One year ago today we started a journey that has introduced us to so many amazing people.  People who have dedicated their entire lives to helping sick children.  People who work tirelessly day and night.  People who have stood by us through all of this.  People who step up and advocate for Ellie as if she is their own child.  People who hurt when we hurt and celebrate Ellie's progress with us.

One year ago today God decided that He still has a plan for Ellie here on this earth.  God proved that He is bigger than strokes.  He is bigger than Moyamoya disease.  He is bigger than our biggest fears. 

Today I needed to reflect on the past in order to see how far Ellie and our family have come in a year.  I'm proud of Ellie and our family but mostly I am thankful for God's love and grace.  God's plan is bigger and better than anything we can imagine.  To God be the glory!

One year ago today God was by our side and He has never left us.  Today we celebrate God's healing hand.  Today we celebrate God's faithfulness.  Today we look back but then we keep moving forward.

Skyler at 6 months old

I love this "I want to eat your face with my gummy mouth" smile

A very belated happy half birthday to my little Skyler!  Skyler is almost 7 months old now but I wanted to go back and make a 6 month post for her. 

Age:  6 months
Weight:  17 lbs 5 oz (70%)

Height: 26" (54%)
Clothing size: 6-9 months
Diaper size: 3

Hair Color:  Brown

Eye Color: Brown-ish

Number of teeth:  0

Favorite songs:  "The Itsy Bitsy Spider" and "The Wheels on the Bus"

New things:

 *  We haven't been giving her Prevaid for reflux and she seems to be doing well

*   She had an ultrasound on her kidneys and her kidney seems to have gone from Stage 3 hydronephrosis to normal sized in just 2 months time!  This was noted as being fairly remarkable.  We are awaiting a follow up appointment next month with her urologist to see where we go from here.

*   Can roll from back to front but then tends to get stuck on her stomach

*   Still hates tummy time but can really lift her head up now

*   Doesn't sit unsupported yet 

*   She is very happy baby

The Right Words

A friend and I were talking the other day and she told me how much she likes this blog.  Then she asked me if I could write a post about the things I wish people wouldn't say to me as a special needs mom and the things I wish they would say.  And the truth is, I've thought about writing a blog like that for awhile now.  But the reason I haven't is because I know that most people who ask about Ellie or make a comment about her actually have their hearts in the right place.  They are curious or concerned or want to offer words of encouragement but they just don't know what to say and end up saying the wrong thing.

And truthfully, I feel like I do this all the time myself.  I mean one thing but it just doesn't come out right.  So I can absolutely relate to this feeling of concern that someone would have in fearing they will say the wrong thing.  But the truth is, I would rather someone ask something in the wrong way then to not ask at all.  I do, at times, feel like people avoid us or avoid asking about Ellie because they don't know what to say.  Here's the thing though, all moms like to talk about their kids.  And all moms are proud of their kids.  Moms of special needs kids are no different.  In fact a lot of moms of special needs kids have amazing stories to tell and if you don't ask you might miss out on the opportunity to hear about a real life miracle that's right before your eyes.

With that being said, there are certain thing that I do like hearing more than others.  And while Ellie doesn't seem to pay much attention to what adults are talking about, eventually she will and she is a person with feelings just like the rest of us. So the following are some of the things people have said to me that I'm not especially crazy about and examples of things I really like hearing.  I will note that these are just my own personal preferences and so I can't speak for other parents of special needs children.
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1.  I'm not a big fan of questions or comments that use the word "normal".  For example, "I hope she gets back to normal soon" or "Do they expect her speech, cognition, hand use, etc to one day be normal?"  The questions and comments aren't wrong in themselves but when you throw the word "normal" in there, it gives me a sense that you think my child is something other than normal and to our family, Ellie is just as normal as everyone else.  I won't really expand on this because I already did in a previous blog post.

What I would rather hear instead:

"I'm still praying for Ellie."  I love this one.  If you could say one thing to me that would mean the most, it's this.  I believe in the power of prayers and to know you are still praying for my daughter means the world to me.

"What do her doctors think about her speech, cognition, hand use, etc?"  See, you don't have to use the word "normal" and by asking the questions, I know you care about my daughter.  It doesn't bother me one bit to talk about.

2.  "She's going to be just fine."  There's a mom I know who likes to say this to me.  I know she means well.  But I have noticed when she thinks something is wrong with her daughter, she doesn't say this.  When something is wrong with her daughter she is concerned, as she should be.  The thing is, Ellie's doctors don't tell us, "She's going to be fine".  On the contrary they tell us, "If you ever think anything is wrong you need to call immediately".  So how can she be so sure that Ellie's going to be fine?  It also feels like it invalidates the constant concerns that Charles and I do have for Ellie's health.

Instead she could say:

"She is such a miracle!"  

"You must still be so concerned about her."  The last thing I want is anyone's pity but I do think it shows how much you care if you are willing to put yourself in my shoes for a minute and realize that having a child with a serious illness is not easy.

3.  "What's wrong with her?"  In general this question doesn't bother me because I know what the person really means and I know that just asking shows that the person cares.  What I do have a problem with is when this question is asked where Ellie can hear it.  Because while I understand what you are asking me, she doesn't need to hear that someone thinks something is wrong with her.

You might think it's children who ask this question but that hasn't been my experience at all.  I've been asked the question in these exact words 3 times and all have come from adults.  I think children ask better questions in this instance.  Children ask, "Why does she wear a helmet?"  "What's that on her stomach?" (asking about her G button), and "Is that a leg brace?"  A lot of little girls start out with, "I love her helmet!  Why does she wear it?"  Children get it right.  Simple and to the point without the negative implications.

4.  Please don't compare Ellie to your typically developed child.  When people compare Ellie to their child, it is always done in an attempt to encourage me but it in fact does the opposite.  The times this has happened, it has been people comparing Ellie to their child that is younger than she is.  "It's okay, Carson doesn't talk much yet either.  I really don't think she is much behind where he's at."  When this happens, I can't help but in my mind compare Ellie to their child for the rest of the time we are together and every comparison hurts.  Carson runs, Carson jumps, Carson climbs, Carson calls for his "Mama", Carson asks for "wawa" (water), Carson can make animal sounds, Carson can answer "yes" and "no" questions...... You get the idea. 

This doesn't mean that I don't want to hear about your child.  Because I do.  I want to hear about all the amazing things that they can do because I can relate to the feelings of pride as your child meets milestones, grows, and learns new things.  As long as we aren't comparing our kids, I can be happy for your child's accomplishments just as I am happy for my own children.

5.  "I can't even tell anything is wrong with her."  I never really know how to respond to this statement.  Should I point out for you all the ways she is different from other children her age?  Usually I just kind of agree and move on because I'm sure the person is just trying to be encouraging even if their statement minimizes everything Ellie has been through and continues to go through.  And just like the problem I have with the world "normal", this too indicates that the person thinks something is wrong with my perfect little girl.

It's much nicer to hear:

"She sure is a determined little girl."

"I know you must be very proud of her."

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I want you to talk to me about Ellie, whether you know the right things to say or not.  When I have Ellie with me and we meet someone new, I actually feel more awkward about the situation if that person doesn't ask me about Ellie than if they do.  I don't know if they just think they aren't supposed to ask or if they actually don't want to hear about her.  And since I find it awkward, I will oftentimes go ahead and tell the person all about Ellie, whether they wanted to hear about her or not.

I'm still learning the right and wrong things to say myself.  Recently Payton saw a man in a wheelchair and she blurted out, "Maybe he had a stroke!"  Being the mother of a child who has had strokes did NOT prepare me to be able to respond to Payton's comment.  I didn't know what to say!  He acted like he didn't hear her and so I acted the same way.  I hope people will forgive me for saying the wrong thing or not saying anything at all when I just don't know what to say.

I think the best advice is to always speak from your heart and then the person listening will know your intentions even if your words don't come out right.  The intentions behind the words are far more important than the exact words you use.  So to my friend who asked me to write this blog, thank you for caring enough about my feelings to ask me to write about this topic.  You are careful with your words and on top of that, I know your heart and I know that you only mean good in the things that you say.  I think most people mean good whether they use the right words or not.

How Ellie is doing these days

As I posted the other day, it has now been over a year since Ellie's first stroke and brain surgery.  Then it was exactly 2 months later that she suffered her really bad stroke on the other side of her brain.  The second stroke (and several smaller strokes to follow) is what has left her mentally and physically disabled.  Yes, it's finally registering for me that she is disabled in many ways.  As we get closer to it being a year after her major stroke, I am starting to accept that strokes cause permanent brain damage.  I think I was in denial of that for quite awhile.  I kept thinking she would just bounce back from it like she did her first (much smaller) stroke.  And one day she may regain all the abilities that she lost but that doesn't mean the damage isn't still there.  Things have always been a struggle for Ellie and I know that isn't going to change.  What comes easy for many children isn't going to come easy for her.

But Ellie is a determined little thing and I know she has it in her to keep overcoming all that is stacked against her.  I see 1 year old babies doing things that she can't do and sometimes I feel a wave of sadness but then I remind myself that they haven't overcome multiple strokes.  

As Payton said recently, "Everyone is different.  Some people have black hair and some people have blonde hair.  Some people have curly hair and some people have straight hair.  Some people have Moyamoya and some people don't."  

We aren't waiting and hoping that Ellie "gets back to normal" because to us Ellie is an normal as anyone else.  In fact, we are so used to Ellie the way that she is that we sometimes are surprised when we see typically developed kids doing things.  For instance, sometimes when I see Skyler use both hands to grab something my initial reaction is, "Woah, how did she do that?!" before I remember that most babies do use both hands.  Or when a little 2 year old at church, who was sitting in an adult sized chair, started leaning to reach play dough and I ran to be by her side because I thought she was certainly about to fall out of her chair and hit her head.  And when I go to pick up Skyler, I am always careful not to put pressure on her feeding tube (that she doesn't have!)  To say we are praying Ellie "gets back to normal" would imply that we think she is currently something other than normal and that just isn't the case at all.  Ellie is perfect just the way she is.   

Working hard in therapy

But, of course, we want to provide Ellie with the opportunities to accomplish all that she can and so she continues to receive 6 therapy sessions a week at our house through a pediatric home health company.  And so that's been the story of our lives with Ellie in 2015 so far.  

In speech therapy Ellie is making improvements in the number of sounds and ASL (American Sign Language) signs that she knows.  We are extremely blessed to have a wonderful speech therapist.  Ellie remains nonverbal and communicates mostly through screams, grunts, and pointing.  But she does have a few sounds and several ASL (American Sign Language) signs that she uses now with meaning.  Her outward communication is equivalent to that of a typically developed 9-12 month old.  

Her understanding of things is higher at about 12-18 months.  She can't identify a single color or shape even though I work with her on those things regularly.  She is starting to be able to point to a few body parts when I ask her such as, "Where are my eyes?" but won't point them out on herself.  She is also starting to point out a few common animals and objects when I ask her to find them in picture books.  She can follow directions that are very familiar to her but is unable to follow unfamiliar directions.

Playing hard in therapy

Ellie still has no use of her arm or hand.  I hear all the time, "Wow, she looks like she's moving her arm a lot more!" and I wonder what people are talking about.  Yes she bring it up as balance and can manage to move it out of her way but she's been doing those things since at least January.  There is hope that one day we will be able to get her to use it as an assist.  An example of this would be that she could use it to do things that require 2 hands such as picking up a large ball even if she does so with her hand fisted.  But for now, if she can't do something with one hand, she won't do it at all.

I think Ellie's walking is about the same as it was in April.  She walks with a limp and sometimes her toe drags and she falls forward.  Lately she's been having some trouble with falling right onto her G Button which causes her pain and bleeding.  She is getting better about going up stairs with assistance but still can't climb or jump.  

But dance, yes she can dance and she loves it!  I remember a moment when Ellie was very sick in the hospital.  She was undergoing a sedated MRI and I was sitting in the waiting room in tears.  I was attempting to distract myself with my phone, just trying to keep from melting down in the hospital waiting room when a friend wrote, "Get an image of how you want to see Ellie after this is all over and keep reminding yourself of what you want. Perhaps a really happy fun recent moment. Hold that in your mind and keep telling God that this is what you want. When you find yourself consumed with scary thoughts go back to that happy smiling active image. I'll do the same."  I responded with, "I want to see her home, dancing to Party Rockers in the living room with her sister and a big smile on her face."  That's what I wanted more than anything in that moment but Ellie was in such bad shape that I questioned whether I would ever again get to be home with my baby, watching her dance.  So now we dance every night and it's a daily reminder of how much I have to be thankful for and how far Ellie has come. 

This has been a long summer already.  Summer used to be my favorite season--- swimming, soaking in the sun, enjoying time outdoors, the long days.....  But these things aren't possible with Ellie. We live 2 blocks from the beach that Ellie can't play on and water she can't swim in because her g button can't be exposed to sand or water that isn't chlorinated. She also can't be out in the heat.  Heat causes your blood vessels to constrict and since her issues are with limited blood flow to her brain, heat could actually lead to her having another stroke.  Heat can also dehydrate a person which would also affect her blood flow but thankfully if we realize that she is at risk of dehydration we can give her extra fluid in her feeding tube to prevent it. We are outdoorsy type people so being stuck inside for weeks on end hasn't been easy.  Needless to say we are ready for fall and some cooler temperatures!  

When you are stuck indoors all summer you have to make your own fun!

Ellie will have a surgical procedure called a cerebral angiogram on Tuesday to help determine if her brain surgeries were successful in creating a new vascular system in her brain.  This is a minor surgical procedure and she should be able to go home later that day but there are risks to this procedure such as it causing a stroke, excessive bleeding, and problems related to going under general anesthesia so we certainly wouldn't mind some prayers!  Ellie has only had one other angiogram performed and it was done after her first stroke and used to confirm the diagnosis of moyamoya disease. 

Her recovery from that angiogram was one of the scariest moments of my life.  She woke up from the procedure without issue and was resting in the recovery room with Charles and I also in the room discussing the results with her neurosurgeon.  When suddenly her mouth opened really wide, she got a distressed look on her face, and she didn't take a breath.  I started yelling, "She's not okay!  She's not okay!"  Then her alarms started going off as her oxygen levels dropped.  The nurse ran in and started giving her rescue breaths.  Thankfully after just a few rescue breaths she resumed breathing on her own.   But she proceeded to do this several more times.  To this day we still don't know the cause of these episodes but we are looking forward to having this angiogram behind us.

Thank you all for continuing to follow our journey.  I will update everyone on Ellie's angiogram on Tuesday.

Hard to believe she is 5 months already!

Age:  5 months
Weight:  15 lbs (70%)

Height: 24.75" (57%)
Clothing size: 3-6 months but they are getting too small
Diaper size: 2

Hair Color:  Dark brown

Eye Color: Hazel-ish/ Brown-ish

Favorite songs:  "The Itsy Bitsy Spider" and "The Wheels on the Bus"

New things:

 *  We've been giving her Prevacid and she is nursing without issue and seems less hoarse.  Hopefully that means it is working.

*  Skyler laughs often when I talk to her.  Especially when I ask her, "Why are you so cute?!"  and when I talk to her about bears.  You know, offering advice about how if you ever see a bear you should run really fast because bears bite.  Everyone has these kind of conversations with their 5 month old, right? 
*  Prefers to nap in her car seat even when we are at home
*  Starting to like toys and to chew on things
*  Likes her pacifier

 

One Year Stroke Anniversary

One year ago today Ellie suffered her first stroke that led to her diagnosis of Moyamoya disease and her first of two brain surgeries.  For her one year anniversary blog post I thought I would go ahead and tell her story again since we've met plenty of new people in the past year and others might have only heard some of Ellie's story.  I started writing and got to the moment she had her 2nd stroke and couldn't go on.  I guess I'm just not ready to relive all of that just yet and it's hard to find the words to describe what our sweet Ellie and our family went through.  

But today I view as a celebration.  How could we possibly not be thrilled when Ellie is still with us and is doing so well?  I know how close we were to losing her.  And I saw other families in PICU who didn't get to take their child home and my heart still breaks for them. What they wouldn't give to have their child back and to be in our position to celebrate their child.  Yes the past year is full of pain but how can I sit around and feel sorry about our situation when I know how incredibly fortunate we are?

So today we will celebrate!  We will celebrate Ellie's life and the lives of Payton and Skyler too.  We have so much to be thankful for.  

Thank you God for continuing to return Ellie to better health.  Thank you God that she hasn't suffered anymore strokes or seizures.  Thank you God that we are home together as a family.

Thank you God for Ellie's neurosurgeons who are kind, caring, and brilliant.  Who checked in on Ellie for 81 days in the hospital even when she was no longer under their direct care because she was in rehab and later under the care of general surgery.  

Thank you God for all the wonderful nurses and nurses aids who helped care for Ellie when she was in the hospital.  For PICU nurse Katie who gave me a big hug and comforted me when I was upset, not because anything had happened to my own daughter but I was upset after my Ellie's roommate coded.  And who a couple hours later rushed to Ellie's side and told her to "Breath!" because her oxygen dropped during a seizure.  Thank you for Marlene, the nurses aid who prayed over Ellie when she was bleeding internally and who sang "Jesus Love the Little Children" to her daily to help bring down her blood pressure.  Thank you for the nurse that gave Ellie rescue breaths when she stopped breathing in the recovery room.  Thank you for all the nurses in Pediatric ICU, who have one of the hardest jobs in the world caring for critically sick children for 12 hours a day.  Thank you that I could create an entire blog dedicated to all of the amazing nurses we have been blessed by. 

Thank you God for Ellie's pediatricians, rehab doctors, and all others who have gone out of their way to help and support her and our family.

Thank you God for all the therapists who really invest themselves in helping Ellie to get better.  Who don't just care about Ellie's hand or leg or speech but who care about Ellie as a person.  And who care about our family.  I spend more time with Ellie's therapists then I do other friends and extended family members.  They have become my friends and offer support to me on a daily basis. 

Thank you God for all the people in our community who make us feel welcome and accepted despite our differences and disabilities.  For the ladies at Payton's preschool who have taken such good care of her, for the librarians at the public library, the ladies who work at the Galveston Children's Museum, those at the church we have started attending, and so many more who are always welcoming to us.

Thank you God for all of our family members and friends who have been there to support us through all of this.  Thank you for their prayers and for the strength and comfort You provided for us, even during the scariest of moments.  Thank you for my Mom who has been willing to hop in her car at a moment's notice in order to be here to help us.

Thank you God for Payton, who has been such an understanding, helpful big sister who cares deeply about her little sisters.  Thank you God for Ellie.  For her smile, her laughter, and her ability to say, "I love you" without speaking a word.   Thank you God for sending us Skyler who is the perfect fit for our family.  Skyler, who is so calm, patient, and who smiles and laughs often.  Thank you God for Charles, who is the rock of our family, who is always there for each of us, and who would do anything for our family.

Thank you God that your plans for us are not to harm us but to give us hope and a future.  Thank you that You will never leave us.  You are always there for us.  Thank you for all of this and so much more.

Skyler- 4 months old

Skyler had her 4 month checkup and vaccinations today.  She's actually 4 months, 2 weeks old now so I'm a little late on things.  But she's doing great and is such a happy, sweet baby!

Age:  4 months, 2 weeks

Weight:  15 lbs (70%)

Height: 24.75" (57%)
Clothing size: 3-6 months although she fits into some 9 month clothes
Diaper size: 2

Hair Color:  Dark brown

Eye Color:  Dark hazel-ish

Favorite songs:  "The Itsy Bitsy Spider" and "Motor Boat Motor Boat Go So Slow"

New things:

 *  Is awake more during the day

*   Loves to nap outside and when we are on the go.  Does not like to nap in the house and when she does she just takes cat naps in her baby swing.

*   Went on her first trip to her grandparent's house in Central Texas and the next weekend   went to her other grandmother's house in Dallas for her cousin Lauren's wedding

*   Cries when her sisters or any other child gets too close to her

*   Smiles when adults talk to her

*   Still has an enlarged left kidney.  She will have another ultrasound at 6 months old unless she shows signs of a UTI before then. 

*  Her voice has been hoarse lately for no known reason.  She's also been coughing only when   nursing so her pediatrician thinks maybe she has reflux.  We are starting her on Nexium to see if improves the hoarseness and coughing.

What Charles won't tell you himself

For some reason it always seems like moms get all the credit for everything.  I can't count the number of blog posts I have seen linked on Facebook about how difficult it is to be a stay-at-home mom or a working-mom.  Have you ever seen a post about how hard it is to be a working dad?  I haven't.  And then when you throw a special needs child into the mix, moms are really made out to be super heroes (which we are not, trust me on this one!)  It's always like, "Wow Becky, I don't know how you do it!  You are so amazing!  Oh yeah and Charles you aren't too bad yourself.... What exactly do you do again?" 

And he would be the first to agree with you, but I'll tell you what he does.  He works hard all the time, not expecting to be recognized for all that he does.  He is the rock of our family. 

He gets up at 5:00 a.m. every week day morning so that he can drive 1 hour 15 minutes to work, put in a full day of work, and still be home by 5:20 p.m. so we can have dinner as a family. 

He worries each time his cell phone rings at work that he will get a dreaded call that Ellie has had a stroke and is being rushed to the hospital.  It's much easier to be with her all day and to see she is okay.

He has twice received that horrible phone call and driven as fast as possible back to Galveston to meet us at the hospital. 

He has taken off from work for extended periods of time to be with Ellie and with me while she was in the hospital.  When Ellie was in PICU there were nights he slept in the waiting room and when she was in a regular hospital room he slept on the couch.  He was always there for us, day and night.

He held her little body as she had seizure after seizure and there was nothing we could do but pray and wait for her to be transferred from Galveston to Houston. 

He has gone into MRI machines and held her as still as possible, all while she screamed and screamed and looked into his eyes not understanding why someone she thought loved her could possibly do such a thing to her.  He has done the same when she's had to get IVs, blood draws, PIC line changes, X-rays, and NG tubes inserted down her nose to her stomach.

He has become an expert on Moyamoya disease, pediatric strokes, and the genetic abnormality that led to the disease.  He knows more about these topics than most doctors do.

He baths our girls every night and has since Payton was born.  He volunteers to change dirty diapers.  He lies in bed with Ellie for an hour every night trying to get her to sleep.  He prepares and runs Ellie's g tube feeding each night and puts water and medicine in her feeding tube when he is here during the day.  He oftentimes carries a heavy backpack on his back and a child in each arm so that I don't have to carry anyone or anything, even when I insist on helping.

He teaches our girls to love God, others, and themselves.  He teaches them to laugh, to work hard, and to play.

He supports me in everything and shows me unconditional love.  I couldn't do this without him and I thank God for Charles.  Happy Father's Day to my best friend!

 

Skyler 3 months Old

Age:  3 months

Weight:  ~ 13 1/2 lbs

Height:  ~ 23"
Clothing size: 3-6 months
Diaper size: 2

New things:

 *  Lots of smiles when talked to

 *  Loves her pacifier
*   Sleeps all night until 6 a.m.
*   Sleeps most of the time when we go places
*   Makes coo-ing sounds
*   Hates tummy time and rarely tries to lift her head

I can't believe it's been 3 months already!  This might have been the fastest 3 months of my life.  I feel like I literally just had Skyler a couple of weeks ago.  

Skyler is such a good baby!  She sleeps well, nurses well, doesn't cry much, and gives me so many beautiful baby smiles.  She's a fairly big baby and she reminds me a whole lot of her biggest sister Payton when she was this age.  I am so in love with her!  God knew exactly what He was doing when He blessed our family with this perfect, beautiful baby!   

What's new with Ellie Boo?

Displaying a check received from a fundraising event held at Nicholls State University in Thibodaux, Louisiana.

Our sweet Ellie continues to do well.  Every now and then someone tells me they are still praying for Ellie and that means the world to me.  I even still get cards in the mail, sometimes from people I don't even know, letting me know that they are still praying for Ellie.  And Ellie, with her pink decorative helmet, has become fairly well known around town so we often have people asking us how she is doing. We have received so much support during Ellie's illness and words can express how appreciative we are.

In mid-January Ellie had her first MRI since her brain surgery.  From the MRI they could confirm that she hasn't had any additional strokes and that the middle meningeal arteries appear thickened which would imply that the arteries are starting to take over the role of supplying blood to the brain.  So it was a good report.  The plan is for Ellie to undergo an angiogram this summer where they will run dye through the arteries in her brain and from that we should get a good idea as to how her blood flow looks and if the new arteries are transporting the blood as we pray they are.

Waking up from the MRI anesthesia

In February we switched from driving to Clear Lake for out-patient therapy services to home health services that come to our house.  I really loved Ellie's therapists at Texas Children's Clear Lake but I knew it would just be too difficult to make the 40 minute drive 4 days a week with a baby.  So now therapists come to our house 6 times a week to work with Ellie.

Working hard in therapy

Ellie, who is almost 2 1/2, is currently meeting the milestones of a 12-18 month old.  So she is still significantly behind but continues to show improvements all the time.  Since we began home therapy, we have seen her communication skills jump from that of an 8 month old to a 14 month old.  Her speech therapist has 25 years of experience and is really wonderful with her.  Ellie is still non-verbal but she is finding more and more ways all the time to communicate her wants and needs to us.  One way she is learning to communicate is through sign language (ASL).  She regularly uses the sign for "Please" (and verbally says |E|) to get what she wants and the sign for "All done".  She also knows the signs for open, bird, dog, hat, brush teeth, and thank you.  Verbally she can make the following sounds-- |E|, Ah, Ma, Nah, Mm, Uh, Ha.  She waves and says "Ha" and will repeat "Uh" when she wants to be lifted up.  She points to what she wants and will nod her head "Yes" or "No" in response to questions.  Ellie can follow basic commands like "Sit down", "Come here", or "Can you get that?"  She generally can't follow directions of things that aren't familiar to her unless you demonstrate something for her and then she is really good at being able to imitate what you do.  

She loves to play in the dirt!

My little gardener

Ellie has gotten good at walking, even walking fast.  Although she does still fall a lot, especially when she gets tired.  She wants to walk everywhere, all the time, and is unstoppable.  She also can get herself to her feet pretty effortlessly, using just her one good arm to push herself up.  She is working hard in physical therapy to get her legs strong enough to go up and down stairs but still seems to have a long way to go with that.   

Happy fairy

We are all crazy about our new baby

Ellie still has no use of her right arm/hand.  Her occupational therapist does a good job of pushing her to the point of frustration and then backing off and then pushing her again.  We put objects inside of her hand, direct the hand to objects, push the hand against objects so the hand is weight bearing, etc.  The other day her neurosurgeon said that Ellie may not get back fine motor skills with that hand but that she will absolutely get back some use of the hand with time.  As a result Ellie has become a lefty and is getting good with using her left hand for everything.

Crying because I had been trying to take pictures of Skyler and not her

Ellie's head has felt fairly uneven since her surgeries but recently we had noticed that the entire left side of her head seemed to have sunk in.  This created a dramatic feeling ridge along her surgical site and you can also feel a knot from a screw.  Feeling her head is a little disturbing and when her hair is wet you can see that her head is no longer shaped right.  So a few weeks ago we took her in to see her neurosurgeons and both of them reassured us that although this isn't supposed to happen, it's purely cosmetic and of no concern.  They said because of her extensive stroke damage, it has caused her brain to shrink and so as the brain has shrunk, her skull followed by sinking in.  We were relieved that there is no concern about this and her hair, that has started growing curly, covers it up so it's not noticeable.  Shrunken brain or not, Ellie is a smart little girl and is an overcomer.  

Indention in her head

Sweet sisters

Have yall heard the Christian rock song by Mandisa called Overcomer?  If not you should Google it and listen or watch the music video.  That's Ellie, with God's help she is in the process of overcoming all of this.  And really that's all of us because we all have things we are working to overcome.  We just have to put our trust in God because we may not be able to do it on our own but He can help us overcome all things.  So I'll end this blog entry with some of the lyrics to that song....

You're an overcomer
Stay in the fight ‘til the final round
You're not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds You
That you're an overcomer
You're an overcomer

Easter egg hunting