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

Skyler's birth story

My pregnancy with Skyler was thankfully very smooth and uneventful.  My focus during those 9 months was on Ellie's health issues so I'm grateful I didn't need to worry about my unborn baby on top of everything else.  From the beginning Charles guessed that Skyler would be born on February 22 (his sister and grandmother's birthday) and I guessed she would be born on February 23 (my dad's birthday and my grandfather and great-grandfather's heavenly birthdays).  And even though we didn't find out the gender during our pregnancy, we were both convinced that our baby was a girl.  

The week prior to February 22-23, I was having a lot of contractions, bleeding, and according to my doctor I was 2 cm dilated.  I had c-sections with both Payton and Ellie and so this would be my 3rd c-section.  If I had made it to my 39th week then I would have had my c-section on March 4 but I didn't make it that long with my other two pregnancies and didn't figure that I would with this one either.  With Ellie I waited until I was in active labor before my c-section.  You know, the kind of labor where you are screaming and can't breath and are begging them to cut your stomach open immediately.  So this time around my OB said, "You're having a c-section, there's no reason for you to suffer so don't wait until it gets to that point".  That sounded like a great plan but at the same time, with Ellie my labor progressed fairly quickly from the contractions being completely bearable to absolutely unbearable so I knew it would be a hard thing to time.  

In the days leading up to Skyler's birth, Charles came down with a terrible cold that went right to his chest as a bad cough.  A few days later Payton came down with it and then my mother-in-law caught it as well.  I started feeling very concerned about having a baby and having this awful upper respiratory illness hanging around.  I was concerned that my newborn would catch the illness, I was concerned that I would come down with it right after having my c-section, and I was concerned that Ellie, whose body is still weak from her strokes, would catch it.  I believe God put a certain thought into my mind to reassure me during this time and that thought was, "God will protect the vulnerable".  The three of us were vulnerable for different reasons and God was faithful and none of us came down with it.

The weekend of February 21-22 I was pretty miserable with contractions.  Eating made me feel sick and eventually I stopped eating and drinking because I kept thinking I would be heading to the hospital at any moment and they don't want you to have had anything to eat or drink prior to your c-section.  My mom drove from Georgetown in anticipation of the baby's arrival.  I still didn't feel close enough to active labor to go to the hospital so on Sunday morning my mom went back home.  Sunday night my contractions became stronger to the point where I couldn't relax and couldn't sleep through them.  They were still spread apart enough where I could drive so we decided it was best for me to get myself to the hospital while I still could.  Charles stayed with the girls who were sleeping and I drove to the hospital.  It was about 2 a.m. when I called my mom to tell her I was headed to the hospital.  She hopped in her car and headed our way.  

At the hospital my contractions came in clusters with larger gaps of time in between.  A resident doctor checked me and also felt my stomach and said, "Your baby still seems small, maybe it's not ready to arrive yet".  I don't know why but with Payton and Ellie the doctors thought I would have tiny babies too and all of my girls have arrived as good sized babies.  The resident said she thought she should send me home to wait until I was in active labor.  She left the room and I called my mom to tell her to turn around and go home.  Soon after I hung up the phone with her, the resident came back into the room and said, "Your blood pressure is elevated and there's no reason to keep a full term baby in there since the baby is safer being born at this point.  So you will be having your baby this morning."  I was pretty shocked by the sudden change of plans but was thankful because I could tell my labor was progressing and knew if I had been sent home I would have just had to come back later in the day and possibly be in much more pain by then.  So once again I told my mom to turned her car back around and come to Galveston.

While waiting for my c-section, Charles and I both took guesses on the weight and gender of our baby.  We both guessed girl and I guessed 7 lbs 12 oz as the weight, which was how much Payton weighed at birth.  My doctor arrived later in the morning and once the operating room became available I was taken in.  

Skyler Christin was born on February 23 at 10:54 a.m. weighing 7 lbs 12 oz and measured 21 1/2 inches.  Skyler was screaming, healthy and perfect.  My c-section lasted about an hour because we decided to bank the cord blood since there have been experimental trials of the use of stem cells to treat stroke damage.  I also had a tubal ligation so no need for anyone to make comments about a possible #4 because 3 kids is enough for us.  

While they were in the process of stitching up my insides, my spinal began to fail and I regained feeling to the left side of my body.  I began to feel a lot of pain.  Thankfully my mom had encouraged me to ask if they could give me an epidural along with the spinal to offer extended pain relief during recovery and since I had that epidural in, the anesthesiologist was able to numb me up again by injecting medications into it.  Besides the fact that it possibly saved me from having to be put under general anesthesia, I would highly recommend the spinal/epidural combination to anyone having a planned c-section because it made my first 24 hours of recovering so much more comfortable.

After my c-section they brought me into recovery where Skyler and Charles were there waiting for me.  I love that UTMB now allows the baby in the recovery room with you because just 2 years ago when I had Ellie they had a policy where the baby had to go to the nursery for 4 hours before they could be reunited with their mommies.  Skyler's blood sugar was too low but since she was with me I was able to nurse her and immediately after her blood sugar jumped up to normal.  My first thoughts on holding Skyler was that she had the cutest little chubby cheeks I had ever seen, dark hair, and that she was so perfect in every way.  

I spent 2 nights in the hospital and then was able to come home.  My mom stayed at the hospital with me so that Charles could stay at home and take care of the girls including Ellie's medical needs.  I had been so concerned about how Ellie would do without me but thankfully she handled things really well.  Both Skyler and I were doing great and I was relieved to be able to get home to my other babies.  The first few days at home were fairly stressful because Charles and Payton were still sick and so we tried to isolate Skyler and I from the rest of the family as much as possible.  

With my two previous births I developed pre-eclamsia a few days after birth so I was praying I wouldn't have that problem this time around.  With my birth of Payton it was the most severe.  My entire body was so swollen and my blood pressure was severely high.  I had to be put on a magnesium IV and spent 3 additional days in the hospital.  This time around I seemed to be doing okay until the weekend after having Skyler when I developed a terrible headache and found that my blood pressure was really high again.  I had left over blood pressure medicine from when I had Ellie so I started taking it again.

I had a followup doctors appointment the next Tuesday and I figured my doctor would just prescribe a different blood pressure medication and send me home.  Especially since I was really feeling the need to be at home to help Charles with the girls since he had gotten very sick with his chest cold, to the point that they did an x-ray to be sure he didn't have pneumonia.  In addition to being sick, he was suffering from a bad back ache and was hobbling around the house as it was.   

So when my OB said, "Your blood pressure is dangerously high, we have to put you back in the hospital", I told her I couldn't, that I needed to be home.  And when she said, "I can't let you go home.  You could have a stroke or a seizure with your blood pressure like this".   I was really upset, especially when I continued to question if I truly needed to be in the hospital and was told, "You don't want to end up like Ellie, do you?  Your girls need you".  I'm sure the post-birth hormones played a role in it but everything we'd been through with Ellie in the past year just really hit me hard that night.  I got put back in the hospital and had regained my composure until they started trying to get an IV in me and blew vein after vein.  It was really painful but I started crying because all I could think of is how many times my sweet Ellie has gone through the same thing.  She has suffered and gone through more than any child should ever have to go through and there are times when it definitely hurts my heart.

I asked for prayers on Facebook and God answered those prayers because the blood pressure medicine that they put me on lowered my blood pressure enough for me to be able to go home that very night!  I was so relieved and happy to get back home to my family.

Skyler has done well since birth.  I'm her mother so obviously I'm biased but I think she is so beautiful and perfect in every way.  Seriously she has the most kissable cheeks.  And she has dark brown (almost black) hair and dark colored eyes.  Right now I would say her eyes are a really deep grey color.  She has gained weight and is probably close to 11 lbs at 6 weeks of age.  Her looks and large size remind me a lot of Payton and her high maintenance personality (she screams anytime she's not being held) reminds me of Ellie.  

Skyler sleeps well at night which is such a blessing.  Especially because she, Charles, Ellie, and I are all sharing our bedroom right now.  Ellie sleeps in bed with us because we all sleep better that way and because she is attached from her G Button to a pump that gives her formula all night.  And Skyler sleeps in the crib in our room.  Recently Skyler has only been waking up once a night and generally falls back asleep after being awake for 30 minutes to an hour.  Then she wakes up again around 5:00/6:00 a.m. and at that time I relocate her to the baby swing in the living room to make sure she doesn't wake Ellie up too early.  

 She has one issue that is being monitored right now.  While in utero they could see that she had an enlarged kidney.  Ellie had the same thing when she was born and it resolved itself by 2 months so I haven't been too concerned.  But it is something we need to watch just to be sure.  I took Skyler to the urologist this week and wasn't very impressed with the doctor.  He looked very young and seemed unsure of himself.  He kept second guessing the things he told me.  He talked a lot about surgery and wanted to schedule an exam with contrast to see how her kidneys are functioning.  I didn't feel confident with his experience so I will be taking Skyler to a doctor at Texas Children's Hospital for a second opinion.  Hopefully, like our experience with Ellie, this is just something that will resolve itself.

Besides the kidney, Skyler seems very healthy.  When she is awake she is oftentimes very fussy and she does spit up and literally vomits up everything in her stomach 1-2 times a day.  But since her reflux issues aren't affecting her sleep and she is gaining weight, it's not something we are looking at needing to treat right now. 

We also received wonderful news last week.  We had Skyler tested for the genetic abnormality that caused Ellie to have moyamoya disease and Skyler's results showed that she inherited my gene abnormality but that Charles passed on his good gene to her.  In order to be affected, a person has to receive the bad gene from both parents so since she only inherited 1 bad gene, that makes her a carrier like Charles and I are.  This means that she shouldn't ever develop Moyamoya disease.  About a month ago we had gotten Payton's genetic testing results back and she received both good copies of the gene so she's not even a carrier of it.  We are so thankful that God answered our prayers that Payton and Skyler wouldn't be affected by this terrible disease.

Skyler is very loved by everyone in our family.  It warms my heart to see the love that Payton and Ellie have for their baby sister.  Payton asks to hold Skyler multiple times a day and is always saying things like, "Awww, she is so cute!"  She has also started telling me, "I'm so glad she came out of your tummy!"  Payton has lovingly given Skyler the nickname "Stunker Wunker" and unfortunately for Skyler the nickname seems to have stuck.  Ellie likes to look at Skyler and smile and squeal.  Ellie sees me burp Skyler and she seems to think that you can burp a baby by hitting them on any part of the body including the face and head, so we've had to keep a close eye to make sure she isn't trying to burp Skyler's face.  We try to emphasize the idea of being "gentle" with Ellie and she understands how to be gentle but oftentimes forgets and isn't very gentle.  She loves to cover Skyler up with a blanket which includes covering her face and she is always trying to share her toys with Skyler (aka drop toys on the baby's face).  So yes, I attempt to provide constant supervision and so far there haven't been any injuries.  But growing up with Ellie as a big sister might require Skyler to become a tough little girl.  Truthfully I think Ellie and Skyler will be close friends one day or at least I hope they will be.  

Skyler is such a blessing to us and she completes our family.  She is just the cutest little bundle of joy and we are all crazy about her.  God knew what he was doing when he sent Skyler to us.  Here's to all the adventures yet to come as a family of 5!

An update-- 3 months post brain surgery

G Button Surgery

As usual it has been way too long since I updated this blog.  I see that the last blog entry I talked about how Ellie was going to undergo surgery to get her g button and how it was supposed to be a "minor procedure" with just one extra night expected in the hospital.  We had plans to be home for her birthday the following day and for Thanksgiving the next week. 

Unfortunately nothing seems to be easy for my sweet Ellie.  Ellie takes asprin daily to help prevent strokes and her neurosurgeons wanted her to stay on it for her surgery.  She had been on asprin for her brain surgery and, although she received a blood transfusion during the surgery, she had no issue with continued bleeding after surgery.  G button surgery however was different. 

We celebrated Ellie's 2nd birthday in the hospital the day after her surgery.  She was clearly not feeling well, seemed in pain, and spent the day in bed.  We gave her a big race track for Little People cars and she did enjoy playing with it in bed, even though she was clearly not feeling like herself.  Because they were still working her up to getting the proper amount of formula through her g button and since it was the weekend, we thought at that point that we would be going home on Monday.

In the middle of the second night after surgery, Ellie started bleeding out of her g button area.  Then that morning Ellie began vomiting blood.  She continued to vomit blood throughout the day, including large grape sized clots of blood that she would choke on as they came up.  We were highly concerned, as were our nurses (we were still in our room on the rehab floor).  Our nurses kept calling general surgery but no one came to check on Ellie.  That afternoon Charles decided to hook Ellie's g button up to the tubing to see if anything drained out.  Immediately blood started flowing out of her g button in alarming amounts.  Finally a general surgery resident arrived.  Having missed all the vomiting of blood, she dismissed the bleeding saying it probably just looked like more than it really was due to the fact that even a small amount of blood mixed with stomach acid could appear to be a lot of blood for "someone who isn't used to seeing blood every day".  Basically she was condescending and didn't take our concerns seriously at all.  Charles demanded that we speak to someone other than a resident and when no one came he ended up calling the "quick response" number that is posted on the hospital wall.  That actually got us some attention as they sent several specialists to check on Ellie.  While they did connect Ellie to monitors, they didn't have much to say about the bleeding.  Ellie continued to both drain blood from her g button tubing and vomit blood. By evening we were feeling even more concerned.

Charles e-mailed our neurosurgeon and just said, "Ellie is bleeding.  Can you give us a call or if you are here can you come see us?"  It was evening but Ellie's neurosurgeon tends to work long hours and sure enough she showed up at our room soon after Charles sent the e-mail.  She said she was about to pull out of the parking garage when she saw the e-mail, turned her car around, and came to check on things.  She is so wonderful like that!  She too was surprised by all of the blood and ordered blood draws to be done to check on Ellie's platelet levels since having her levels drop too low could put her at a high risk of having another stroke due to the already restricted blood flow in her brain.  And she gave a number to the nurses that if her platelets dropped below that number that Ellie was to receive a blood transfusion.  Our nurse requested that Ellie be moved to PCU (one step up from ICU) but they were full so our nurse assured us that Ellie was her #1 priority that night.  Even with this reassurance, Charles and I didn't sleep at all that night.  In the early morning hours her blood results came back as being too low and Ellie received a blood transfusion. 

Monday morning they took Ellie down to radiology to check on the placement of her g tube.  They found it to be in the correct location but she was continuing to bleed out her g button site and vomit blood.  Later that morning they moved Ellie from the rehab floor to the surgical floor where she would be closer to the doctors in charge of her care.  We talked with the doctors and they felt like if her platelet levels dropped again that they would like to go in surgically to try to find the location of the bleed.  Even though this would be done with a scope, they said because of the chances of breathing difficulties she would have to have the surgery done under general anesthesia.  We prayed she wouldn't need this additional surgery and that the bleeding would just stop on its own.

Early Tuesday morning, when the doctors came in to make rounds they informed us that Ellie's platelet levels had dropped again meaning she would need another blood transfusion and that they would work her into the surgery schedule for that morning.  We signed the papers for surgery and felt that was the best plan.  Then we got her g tube unclogged and instead of draining blood, what came out was mostly clear liquid!  It was a miracle.  So surgery was cancelled and we were so relieved.

That Thursday was Thanksgiving and I have to admit, I had a lot of mixed emotions that day.  On the one hand I was beyond thankful that Ellie was improving and doing so well.  On the other hand, I was sad that we weren't celebrating Thanksgiving with Payton at home as I had thought we would be.  Let me tell you, Halloween in a children's hospital is about as fun as it can get being in the hospital...... people come and set up booths to let the kids trick or treat, there are Halloween parties, everyone dresses up.......  Not so for Thanksgiving.  Besides the sick kids, their parents, and the hospital employees, the hospital is EMPTY.  We would look out the window at the usually busy Fannin Street and there wasn't a car in sight.  We were clearly not the only ones not receiving visitors on Thanksgiving.  And I get it completely, Thanksgiving is the type of holiday that you stay home and enjoy with your family, not volunteer to go cheer up sick kids or even to visit friends in the hospital.  All the restaurants around the hospital were closed so we ate from the cafeteria.  The turkey was in a dark gravy and I actually thought it was pork chops before I asked.  The food was pretty awful but Charles and I had fun joking about it.  I was really wanting a piece of pumpkin pie (which they didn't have) but the "pumpkin whoopie pies" weren't bad and made for a good laugh.  Looking back, there will be many more Thanksgivings and even in our situation we had so very much to be thankful for.

Ellie continued to improve and Saturday we were all packed and ready to be sent home when Ellie started vomiting again.  This time it wasn't blood but she couldn't hold anything down and spent the morning bringing up stomach acid.  Thankfully by that evening she was holding down food again.

Home

Sunday, November 30, 2014, after being in the hospital for 69 consecutive days, Ellie was discharged from the hospital.  It was an exciting day but also an exhausting one.  It was actually a bit like moving because we had accumulated so many things while in the hospital.  Ellie got home and she was thrilled to see all the toys to play with.  In fact, for about 24 hours it was a struggle to get her to eat or sleep because she would throw a fit that she wasn't getting to play instead.  

The next day Charles met my parents halfway between here and their house (they live 4-5 hours away in Central Texas) and picked up Payton.  Words can't express how thankful we are to my parents for taking care of Payton and providing her with a stable living situation among all of the chaos in our lives during this time. My mom drove to Galveston most every week to allow Payton to attend school and to visit us at the hospital. It made things so much easier for us knowing that she was happy and well taken care of so that we didn't have to worry about her.  We are also grateful for Charles' mom and sister Debbie who took care of Payton during the week that my parents moved into their new house and for all those who have offered to help if we should need it. 

Payton was excited to be home and excited to have Ellie home again.  Despite being home, Ellie had daily followup visits with doctors at Texas Children's and therapy evaluations so at first there were no days of just being at home resting.  And actually, those days are still very rare in our lives.  

Birthday Party

The following weekend (the first weekend in December) we finally got to celebrate the girls' birthdays with friends and family.  Payton had been talking about having a party at Jumping World, a trampoline park in League City.  So we let her invite a few close friends to that and also my mom, sister-in law Erin, and my nephews Hank and Hudson made the drive here to attend as well.  It was a lot of fun and was the perfect party for us under the circumstances because it required almost no work or planning on my part.  We also got to attend the Moody Garden's festival of lights with my mom, Erin, Hank, and Hudson.  Payton and Hank had a blast running through the trail of lights together!  And it was about 80 degrees even at night so we didn't have to freeze.  

Christmas

After spending Halloween, Thanksgiving, both girls' birthdays, and Charles' birthday in the hospital, we were so very thankful to spend Christmas at home.  The week before Christmas I started to say, "I'm so glad we get to spend Christmas at home!" when Charles told me to be quiet so as not to jinks things.  The weekend before Christmas we went and visited Santa at Moody Gardens and Payton told him she wanted roller skates for Christmas.  This was the first year that Payton actually liked Santa.  Ellie, on the other hand, wasn't a fan.   

Christmas Eve we made a traditional Thanksgiving type meal to make up for the meal we missed having on Thanksgiving.  It was delicious.  Christmas morning the girls opened their presents from Santa and then later in the morning Charles' mom (Nana) came over and we opened the rest of the presents given to us by family and friends.  Then later we ate tamales from one of the best tamale places in the state, Texas Star Bakery.  It was a quiet Christmas but nice.  

Kidney Check

The day after Christmas we headed up to Texas Children's Hospital early for a scheduled CT Angiogram of Ellie's kidneys.  Ellie has very high blood pressure for someone her age so her nephrologist wanted to be sure that it wasn't caused by restricted blood flow in her kidneys which is a problem for some people with moyamoya.  Thankfully her kidneys looked great!  The genetic abnormality that Ellie has causes hypertension so that very well may be the cause.  Right now her neurosurgeons would rather her blood pressure be too high than too low so they don't want to treat it.  The reason for this is because a higher blood pressure encourages good blood flow through the brain whereas having her blood pressure get too low could be very dangerous for someone with Moyamoya.  Eventually they may choose to treat her blood pressure issue but for now they label her as having "permissive hypertension" since they allow her blood pressure to remain elevated.  

The CT Angiogram was a bit of an ordeal, as we suspected it would be because Ellie is very difficult to get an IV in, even with the help of ultrasound.  After 3 separate attempts by different people, they finally did get an IV in her and thankfully after that the test was a quick one and didn't require anesthesia.

New Years

We had decided we didn't want to travel for the holidays for a number of reasons.  But then New Years Day rolled around and we were sitting at the breakfast table trying to figure out what we were going to do for the next 4 days when we decided maybe we were up for a trip to Georgetown.  My parents, both my brothers, my sister in law Erin, and my nephews Hank and Hudson were all in Georgetown so it was the perfect opportunity to see everyone.  The trip there was pretty rough.  Ellie screamed and cried all the way to Bastrop.  We decided maybe it wasn't just the fact that she hates car rides but that it might also have to do with her car seat.  We came to this conclusion because Payton used to act the same way when riding in that particular car seat.  So we stopped at the Walmart in Bastrop and bought a new car seat.  10 minutes later she was sound asleep! We had a nice visit with family and we were glad we made the trip despite the difficulties getting there.  The drive back was peaceful as both girls slept for some of the trip.  

Ellie Update

Ellie made a lot of progress while in inpatient rehab and has continued to make progress while at home and attending out patient therapy 4 times a week.

Physical Therapy

Ellie's walking continues to improve and she wants to walk all day long.  She is still unsteady and we have to watch her close, especially on hard floors and around things she can hit her head on.  She does wear a helmet when walking and a wrist brace, which is mostly to help keep her wrist/hand from curling, but also serves to keep her from breaking her wrist when she falls.  She also she wears an AFO (leg brace) to give her leg some additional stability. 

For the most part Ellie doesn't know how to get herself from a sitting to a standing position.  A handful of times now she has managed to pull herself to a stand but it's not something she remembers how to do from one time to the next.  That is one thing she is working on in therapy.  Her problem with trying to stand up is that she's learned to lean herself backwards against the person helping her stand and this strategy just doesn't work when trying to stand up without help.  She does the same thing (leans backwards) when trying to go up and down stairs so that's another thing she's working on with help.

Occupational Therapy

Occupational therapy is directed the most at getting back function to her right arm and hand.  Currently Ellie has no use out of that arm and hand.  She will lift it up when walking to help with balance and when rolling over her arm usually comes with the rest of her body instead of getting stuck under her like it used to.  When sitting or standing it either hangs limp at her side or she just holds it up against her body, but she doesn't make any attempt to use it even when encouraged to do so.

Right now our goal is to continue to bring her awareness to that arm/hand.  We show her the hand, rub different textured things on her arm/hand, hold things in her hand for her, tell her over and over again to "use both hands" and then assist her in doing so.  Her occupational therapist puts kinesio tape on her arm/hand which also serves to draw her attention to that arm. 

One way to tell the brain that a limb exists is to be weight-bearing on that limb.  So the therapists try to get her to crawl or to play while supporting her body with her arms.  Ellie hates this and oftentimes really resists, trying to hold that arm up so that she doesn't have to be weight-bearing on it.  They had hoped that at home she would eventually find crawling to be a method of getting from place to place so that she would weight-bear on that arm, but Ellie has taught herself to do a one armed scoot across the floor on her bum.  As a baby she always bum scooted instead of crawled so it doesn't surprise me that she would go back to it.

Speech Therapy

Ellie is making progress in her speech but she still doesn't have any true words that she uses correctly.  She loves to babble "nay-nay" and "mama" but it doesn't mean "mama".  Her best form of communication comes from her nodding "yes", "no", and signing "all done".  Ellie is constantly "all done" with everything!  A lot of the time when she signs "all done" she also says "mama", but a few times she has said what actually sounds like a muffled version of "all done".  When Ellie sees pictures of horses or toy horses she says "Ney" and when she sees cats she says "Mmm".  When reading books she will sometimes attempt to find objects that you ask her to find.  But if you ask her, "Where's Mama?  Where's Daddy?  Where's your ball?" she won't point to us or to the object.  She is sometimes focused enough to match up simple puzzle pieces on a 3-5 piece puzzle but not coordinated enough to get the pieces in their spot properly. 

G Button

Ellie has gone back to being a really good eater.  She oftentimes eats twice as much as her big sister.  Because she had so much trouble swallowing thin liquids for such a long time, she is still somewhat resistant to drinking.  She will take a sip here and there for praise and sometimes if we introduce a new cup she will drink for a day or two but once the cup novelty wears off she goes back to refusing it.  Because Ellie has restricted blood flow to her brain, it is extremely important that she stay well hydrated.  It's possible that lack of proper hydration was a contributing factor to the major stroke she suffered.  So we put water/Pedialyte in her G Button 5 times a day and then she gets a continual formula feed through the night.  We also put all of her medications, except Asprin that she takes by mouth, into her G Button. 

Our Daily Lives

Ellie is now attending therapy 4 times a week at Texas Children's Clear Lake.  In addition to therapy, there hasn't been a week that has gone by yet where she hasn't had some kind of followup appointment with a specialist.  She sees something like 10 different specialists.  And on top of that, I'm now in my 3rd trimester of pregnancy so I have my own appointments to attend as well.  So we are always on the go.  Besides doctor's appointments, in Ellie's free time she enjoys playing whatever Payton is playing, walking, coloring, playing outside, and playing with toy cars, small balls, and baby dolls.

MRA/MRI

This Sunday Ellie will have an MRA (MRI with contrast) done on her brain.  This will be her 10th time to go under anesthesia and you would think it would get easier for me but so far that isn't the case.  I think because of the time she woke up from anesthesia and then stopped breathing right in front of us, I'm very much on edge during these things.  The MRA is being done to make sure she hasn't suffered any additional strokes since her last MRA (we have no reason to believe she has), to check on how the stroke affected area looks now that the swelling has had a chance to go down, and we also might be able to tell how her blood flow is looking post surgery, although she will undergo an angiogram next month to get a better look at her blood flow situation.  We will keep yall updated on how things go and appreciate all prayers for the procedure and for positive results.  Thank you all for the love and support!!!

Genetics and G Tube

Genetics

With Ellie's diagnosis of Moyamoya, we have always been told that there is only rarely a found genetic link to the disease.  After her first stroke we discussed the possibility of genetic testing but never followed through with it.  This time we decided if we were ever going to be interested in genetic testing that we should get it taken care of now.  We were told there were a few gene abnormalities that have been linked to Moyamoya but that less than 10% of patients with Moyamoya are found to have one of these abnormalities.  That most people with Moyamoya have no known cause for the disease.  We didn't expect to find a link but felt like testing was worthwhile for Ellie's sake and the sake of Payton and baby #3.

Ellie with her physical therapist

So we were shocked when the geneticists called to tell us that they had a "diagnosis" and wanted to meet with us to discuss it.  What they found is that Ellie inherited two abnormal copies of the gene GUCY 1A3 which has been linked to some cases of early onset severe Moyamoya disease, which is what Ellie has.  It is a very rare abnormality and is estimated that only about 10,000 people in the world have it.  In order to be affected you must receive a bad copy of the gene from both parents which through testing they could see that she received one bad copy from Charles and one from myself.  Charles and I are considered carriers because we each have a bad copy and a good copy that we could pass down, which also explains why neither of us are affected with the disease.  This means that Payton and baby #3 each have a 25% chance of having inherited it too.  We intend to get Payton tested soon.  Since early onset seems to be a common with these gene abnormality, that might be a good sign that Payton didn't inherit it.  

Ellie with her occupational therapists

We are still looking into and getting questions answered as to what this means for Ellie's health.  It does appear that it might explain Ellie's ongoing problems with high blood pressure since many people with this abnormality had problems with hypertension starting at an early age.  It also gives us some things to be on the look out for with Ellie's health.  In the only published study of the abnormality that exists, 100% of the subjects (there were only 9 people they could find to study!) developed achalasia by the age of 10.  Achalasia deals with the inability of the smooth muscles in the esophagus to open and close properly, causing swallowing problems.  Although Ellie has had some recent swallowing issues, her issues appear to be directly related to her stroke, but this is certainly something we need to be on the look out for.  Unfortunately the study of genetics is all so new that they really can't tell us exactly what this may mean for Ellie's health in the future.  

Ellie with her speech therapist

God works in mysterious ways and when we found out that we were pregnant and then a week later Ellie had her first stroke, we couldn't comprehend the timing of things.  Knowing what we know now about the chances of our children inheriting this horrible disease, we never would have allowed ourselves to have a third child and risk them being affected as well.  It would have felt completely selfish to conceive knowing these odds, even if the odds are that they have a 75% chance of being unaffected.  Not to mention, having two children one with serious health problems would certainly have felt like enough.  But God has a plan for this 3rd child and a plan for our family.  None of this is a surprise to Him.  When we were saying, "The timing of this is all wrong!"  He was saying, "No, you don't understand, the timing of this is exactly how it needs to be".

G Tube

Ellie continues to do really well, getting stronger and healthier each and every day.  After Ellie pulled her NG tube, once again, this weekend, the doctors and nurses here started talking to us about getting a G Tube placed before going home.  A G Tube is a feeding tube that goes directly into her stomach.  The G tube is much more convenient because it doesn't leave a tube hanging out her nose that she could pull.  And with the NG tube, there's always the concern that it might not be placed right and so any pulled tube at home would have resulted in a ER visit so it could be reinserted and an X-ray taken to check for placement.  So the G Tube sounds like a much better option for Ellie and for us.  Ellie is eating now without issue (although she only chews with the left side of her mouth) and is beginning to drink without aspiration.  The problem is that she is unable to drink the amount of fluids that would be recommended to help insure she doesn't have another stroke.  One theory as to why she had this massive stroke in the first place, despite a relatively healthy looking MRA the week before, is that she wasn't drinking enough and therefore the blood in her brain (being restricted already by the Moyamoya disease) wasn't able to flow properly. So there's no reason to risk another stroke due to her inability to drink the amount of fluids to keep her safe when we have other options.  Her neurosurgeon said in about a year, when an angiogram can show us that the revascularization has been successful and the new vessels are circulating the blood effectively, then at that time we can be less concerned about her fluid intake.  Also, hopefully by that time Ellie will have an understanding of negotiation such as, "Okay, if you want to go play outside I need you to first drink this cup of water".

Not at all happy with her new helmet

The G Tube surgery will be tomorrow morning.  It's a minor procedure but having Ellie go under anethesia is always scary so prayers would be much appreciated!  After surgery she should only have to stay one additional night which means hopefully we will be going home on Saturday.  Saturday is Ellie's 2nd birthday so it would be awesome if we could go home on that day.  We will have been here 2 full months.  We actually wonder if Ellie even remembers our Galveston home, because I know we barely do!  It's been a long journey but hopefully this will be it for our inpatient time at TCH.  We love the people here but we are ready to be back home again, together as a family of 4.

So worn out from her last morning of inpatient therapy that she fell asleep while eating lunch

Since we are in the process of being discharged from rehab, they printed out some paperwork for me.  Something about seeing all of Ellie's diagnosis' on paper feels especially heartbreaking.  I do believe these are all things that Ellie can overcome, it's just still sometimes unbelievable everything that she's had to go through and continues to go through.  It's tough to see your child go from being a completely normal toddler to having so many serious health issues.  And most of all, it's hard to watch your child be in pain and be unable to do anything about it.  Thankfully Ellie continues to improve and I pray one day this will all just be part of an amazing story that she has to tell.

And it continues on a second page with 1 more diagnosis