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

Stronger Every Day!

A week or so after Ellie's second brain surgery, her neurosurgeon said to me, "If we can just get her 6 weeks out from surgery, we should be good".  What he meant by this is that at 6 weeks out from surgery with Ellie's first brain surgery, they could already see the new vessels in her brain "thickening" which means they were starting to transport blood.  Since Ellie continued to have strokes the week prior to surgery, we were very unsure if the strokes would continue after surgery or not.  Surgery itself shouldn't necessarily stop the strokes right away since it takes weeks to months for the new vessels to start transporting blood.  And while our neurosurgeons could tell us, "We aren't sure why it happens this way but patients who are having repeated TIAs (mini-strokes) prior to surgery seem to stop having them after surgery".  But since Ellie was the only patient they have ever seen to have multiple actual strokes leading up to surgery, they could offer us know guarantees as to how she would fair after surgery.

But here we are, 6 weeks after surgery without another stroke!  She also has not had any seizures since surgery either.  God is so good!  I have no doubt that it is through the prayers being sent up by so many that allowed the strokes and seizures to stop.

We won't know for sure how successful the surgery is until 6 months or so from now when they perform another MRA on her to see and really we probably won't get a very accurate idea until possibly a year or so from now when an angiogram can be performed to look at her brain.  But, as long as she continues to not have another stroke, we can assume the surgeries were a success.  Although Ellie will always be at a higher risk of stroke than the general public, successful revascularization surgeries can significantly reduce her life time risk of having another stroke.

No more PICC line!

In addition to making it to this extremely important milestone, yesterday afternoon we had our pre-discharge family conference with Ellie's therapists, doctors, social worker, etc.  Ellie is still set to go home November 19, which is next Wednesday.  We have been here for over 7 weeks now and we are definitely looking forward to going home!  In the conference, each one of Ellie's therapists updated on the progress she is making.  

In physical therapy, Ellie is now walking with only trunk stabilization assistance and is beginning to be able to walk with one handed assistance.  Right now she can take a few steps with one handed assistance and her physical therapists (Robin) hopes that by the time she goes home she will be able to walk up to 50 feet with only one handed assistance.  Ellie can also stand on her own for limited periods of time while holding onto an object for stabilization and can stand independently for a few seconds at a time.  With a little help she can bend down to pick up objects and then stand back up.  Robin reports that when evaluating her physical milestones, Ellie's abilities fall in the range of anywhere between what a 10-16 month old can do.  I think the last time I posted as to where Ellie was at with her developmental milestones I had estimated she was at about what an average 6 month old could do, and now I completely agree with Robin in that I would estimate her abilities to be about that of a 12 months old.  So she is progressing quickly!  Ellie was measured for a helmet that we should receive early next week to help protect her head as she continues to become more mobile.

Ellie's occupational therapists, Alli and Kristin, report that although Ellie doesn't have any functional use of her right hand/arm, they are noticing an increased awareness of that hand.  They notice that she will use her good hand to pick up and move her weak hand.  This is especially noticeable when Ellie grabs her weak hand and then brings it to her mouth to chew on.  Ellie, who was right handed before this, has shown a great increase in her abilities to perform tasks with her left hand.  It's not by choice, but she is going to be a lefty and she's doing just fine in learning to use the good hand that she has.

With speech therapy, Ellie has yet to begin talking again or making sounds on command.  She did this week learn to buzz her tongue which she has been doing all the time now.  Also with speech we are trying to encourage her to communicate non-verbally.  The other day we took Ellie and Payton to ride up and down on the hospital escalator.  Ellie was very excited about this so when we told to wave, she waved to us.  We haven't gotten a wave out of her since, except when taking her back to the escalators.  This is the first non-verbal gesture we have accomplished with her.  Her speech therapist, Jean, reports that she's seen a big increase in Ellie's ability to follow basic directions and some success in matching up pictures with a simple three piece puzzle.  

Speech therapists also work with children on eating and drinking issues.  Jean commented on Ellie's absolute refusal to drink.  From there we talked about how Ellie is more than likely going to be going home on her feeding tube and so Charles and I will receive the proper training on the use of it.  We were very much hoping she wouldn't need the feeding tube by discharge but at this time that doesn't appear to be the reality of the situation.  Not getting enough fluids can put a person with moyamoya at an increased risk of stroke and that is certainly not something we want to risk.  Not to mention without the NG tube she would need to be able to take her medications by mouth.  They are, however, planning a 24 hour trial of no fluids through the NG tube to see if Ellie will drink if she gets thirsty enough.  And next Tuesday they will do another swallow study on Ellie to see if she is continuing to aspirate thin liquids.  With the swallow study they have Ellie swallow barium and then use x-ray to see if that barium goes to her stomach or to her wind pipe.  In the out patient rehab program there is a therapist who specializes in feeding issues and so they will recommend we get some sessions with her to work on getting Ellie off of the feeding tube.  Ellie also should be receiving an audiology exam in the next day or two to make sure that a hearing deficit isn't contributing to her speech problems.

When it comes to out patient therapy, Texas Children's Clear Lake clinic doesn't have openings right now so it looks like at least initially we will be driving here several times a week.  They are still finalizing her out patient schedule but each week she will receive 2 PT sessions, 2 OT sessions, and 3 speech sessions.  Her case worker said, "She will also need followup appointments with neurosurgery, neurology, nephrology, genetics, rehabilitation, nutritionists, her pediatrician....."  There were several other doctors she listed us following up with but I just can't remember them all!  I just laughed when she read off the list of followup appointments, as did a couple of her therapists.  The way it's sounding, I think we need an apartment near TCH because even though we'll be out patient we will still be here constantly! lol  

The motto of the inpatient rehabilitation unit is "Stronger Every Day" and that's what Ellie is doing.  She is getting stronger each and every day.  It's amazing to look back and see how far she has come in the past 7 weeks.  I remember lying next to her in her ICU bed, her eyes unfocused, constantly darting to the side, her inability to move, to comprehend, to communicate.....  I couldn't help but wonder if she would always be like that.  Would she be like a vegetable?  Would she even survive all of this?  And now here she is--- constantly wanting to walk and play and laugh!  Her therapists are always saying things like, "She remembers everything!  She's so smart!"  We are so very blessed!

And blessed with big sister "Super Payton" too!

A HUGE thank you! And an update.

I don't know how to even begin to say thank you to those who have donated to the fund raising effort taking place for Ellie.  "Thank you" in itself seems inadequate but I will say it anyway, thank you all so very much!  Charles and I have been blown away by the support we continue to receive through all of this.  

A special thank you to our friend Julie Romano for setting up the website http://gfwd.at/1rDJjF2, updating the website, and heading up the fund raiser.  Many others offered to do the same for us and we are very appreciative for all the offers to help our family financially.  Our sweet friends the Romanos know all too well what it is like to have a sick child at Texas Children's Hospital.  Their son Johnny was diagnosed with leukemia when he was 7 year old.  In 2008 Johnny relapsed and spent 120+ consecutive days in Texas Children's Hospital.  We prayed hard for Johnny after his relapse and his story weighed heavy on our hearts. 

Then in September of 2008, while Johnny was in TCH battling the cancer, Hurricane Ike hit, devastating Galveston.  We evacuated to my parent's house where Charles and I spent almost 2 weeks living in a travel trailer with our 2 dogs and 2 cats.  Eventually Charles came back to stay with friends in League City so that he could return to work, but the city of Galveston wouldn't let the residents return home.  A couple times they announced they would let residents return home and would let people on for a few hours during the morning but then would shut the island down again, stating it just wasn't safe enough to continue allowing people to return.  I missed those opportunities to return home so when they again announced they would allow residents to return home, I decided I needed to be there at 7 a.m. to make sure I was allowed onto the island.  

The evening before returning home I read an update online stating that Johnny wasn't doing well and that they weren't sure he would make it.  Because I was planning to leave at 3 a.m. to return home, I stayed up all night praying for Johnny and his family.  I remember the drive home so clearly, praying over and over again for Johnny and his family.  I knew the majority of those on the island had lost everything they owned and yet those possessions paled in comparison to Johnny's precious life and what his family was going through.  Johnny entered heaven on that day.  My prayers remain with the Romano family as I know the pain of their loss will always be there.

The Romanos have been such a blessing to so many people following Johnny's passing, raising thousands of dollars for pediatric cancer research.  And now they are a blessing to us in our time of need, as are so many others who have continued to support our family through all of this.

It was a difficult decision for Charles and I to accept financial help.  We very much wanted to handle everything on our own, despite numerous offers that family and friends made to help.  And even with us saying, "There's nothing we need but prayers" there were people who quietly helped us out anyway.  Ultimately we came to realize that if we want Ellie to continue to get the care she needs going home from the hospital and especially into the next calendar year, then we needed to allow others to help us.  And we are so grateful to everyone who has donated, helped get Ellie's story out there for others to see, and for those who continue to pray for Ellie's healing.  Thank you, thank you, thank you!!!

And now for an update on how Ellie is doing:

Today marks 6 weeks since her stroke.  Since my update last week, Ellie has made some pretty major improvements.  My last blog entry focused on her therapists reporting that they felt at a stand-still with her therapy because she wasn't showing any initiative to attempt to do things on her own.  Well, without the help of the medications that were discussed, Ellie has suddenly started to show a great deal of initiative.  In fact, she is down right insistent on doing the things that she wants to do.  

She is no longer satisfied to just sit still.  She is constantly rolling, trying to sit herself up from a lying position, trying to pull up to a stand (she can't yet but she sure tries), and playing appropriately with all kinds of toys.  Once you help her to a standing position she is ready to walk to wherever it is she thinks she needs to go.  She can't stand or walk independently but by the way she tries to take off, she seems to think she can. Her right leg continues to grow stronger and she can move it in a walking motion as long as she has someone holding her up for balance and support.  It's actually a constant, exhausting job to keep her from injuring herself at this point and yet it's a wonderful thing to see her wanting to do the things she used to do.  I'm flat out breaking my back (it doesn't help that I'm pregnant) trying to help her stand and walk all the time and yet I am thrilled to do it because I can see how much she is improving and I want to encourage her to walk. 

Although she still has no speech, her understanding of what we are telling her has improved a great deal.  She now follows simple directions like, "Put the toys in the box", "Build a tower with the blocks", and "Can you give me that?"  If you show her a ball and a car and say, "Which one is the ball?" she is likely to grab the appropriate item.  She also has regained an opinion as to what she does and doesn't want to do.  Yesterday I was pushing her in a little pink car when she saw a tricycle that she wanted to ride.  She threw the biggest fit until we agreed to let her ride it, even though it meant she had to do her speech therapy while on the tricycle.  

Every day they give Ellie a few sips of water and with each sip she coughs and sometimes chokes.  And she has decided she wants nothing to do with thickened liquids.  Which means she is stuck with the NG Tube for now.  She has improved with being able to eat solid foods.  At first I didn't understand how she could handle solid foods but not something as easy to swallow as water.  Her speech therapist explained to me that with solid foods or even thickened liquids, the food/liquid stays in your mouth with enough time to send your brain the signal of "Okay, we've got something that needs to be swallowed, here it comes".  But with thin liquids, they can just slip down into her airways before her brain can register that she needs to swallow.  The NG tube has obviously been a life saver for Ellie but at the same time it's a royal pain in the butt, so we are really hoping her swallowing improves in the next two weeks so that she doesn't have to go home with it. 

Last Friday was Halloween and although we would have preferred to be home with our girls celebrating a "normal" Halloween, the people at TCH and the volunteers here made it a fun day for us.  Before Ellie's stroke I had already ordered the girl's costumes.  Payton insisted that she dress as Jake from the Disney Junior show Jake and the Neverland Pirates and that Ellie would dress as Izzy, Jake's sidekick.  Then a couple weeks ago the costume store Spirit of Halloween hosted a party here at TCH where they let every child pick out a costume.  Ellie didn't attend the party so Payton picked out both of their costumes.  She said she wanted to be a princess and Ellie wanted to be a "bad witch".  The toddler witch costume was really cute so we went with her suggestion.

Halloween morning I put Ellie in her Izzy the Pirate costume.  The therapists were all dressed up for morning therapy sessions and so were most of the kids so it was very fun.  Everyone commented on Ellie's costume which she looked adorable in.  During lunch Ellie got food on her costume and before nap I realized her costume already had a large rip in it.  So it was a good thing she had a backup costume.  That evening I dressed Ellie up as the "bad witch" and we went downstairs to the Halloween carnival.  Ellie surprised us by understanding all the little carnival type games and playing them.  She sat in her little pink car and she could play games like beanbag toss by us getting her close enough to the hole to drop the beanbag into it.  She loved it and got all kinds of fun little toys!

Ellie has come a long way in the 6 weeks since her stroke and with each new skills she regains we are beyond thrilled.  Thank you all for the continued prayers and support!  I'm sure I've said this more than once but we are very thankful for all of you!

And Baby Will Make 5!

I wrote this blog entry on September 22, the day before Ellie had her most recent stroke and because of her stroke and hospitalization, I never got the chance to publish it.  The story starts right before Ellie had her first stroke and initial diagnosis.  So now I’m going to put it out there and I’ve added an update at the end.

September 22, 2014:

We are happy to announce the expected arrival of our third baby who is due the first week of March 2015!   It was in mid-July that we found out we were expecting.  The news was fairly unexpected but welcome news none-the-less.  We knew this was God’s timing and plan for our family.

God’s timing and plan for our family soon because a little harder to accept when just days later Ellie had a stroke and was diagnosed with Moyamoya diease.  While Ellie was in the hospital, she wouldn’t let me leave her side.  If I had to leave her side, even just for a few minutes, she would start crying and sometimes get hysterical.  All I could think was, “This can’t be happening….. I need to be able to be here 100% for Ellie…. I don’t need another baby right now…..”  I’m still nervous about having a 3^rd baby but the good news is they take 9 months to arrive and Ellie is now doing so much better than she was during those days when I lay next to her 24/7 in the hospital.

The first several days that Ellie was in the hospital, I started experiencing pretty uncomfortable cramps due to the stress of the situation.  Prior to Ellie’s hospitalization, I had already scheduled my first OB appointment, which was scheduled for the Friday following her stroke.  I considered cancelling it because I didn’t want to leave Ellie.  But because of the cramps, I left Texas Children’s Hospital (with Ellie happily playing with her Lala and her daddy) and came back to Galveston for my appointment.  The first thing they did at my appointment was to take my blood pressure which registered pretty much off the charts.  The nurse said, “Is there a reason your blood pressure is so high?”  To which I replied, “Probably because this is the worst week of my life”.  From there I explained to her what was going on with Ellie.  She relayed the information to Dr Haver, who is my OB and was also my OB when I was pregnant with Ellie.  

Dr Haver wanted to hear all about Ellie and showed a great deal of concern for her and for me.  She then performed an ultrasound and everything looked good with the baby.  She recommended that I video the ultrasound so that I could show it to Charles when I returned to the hospital.  Then she gave me the best piece of advice she possibly could have given.  She told me, “This baby is doing great.  I don’t want you to worry even one second about it.  Nothing you are going through, no amount of stress that you are under, is going to be harmful to this baby.  This baby is on autopilot so just take care of your other baby right now because this one is doing great.”  And every appointment that I have had since then with Dr Haver she has told me the same words of reassurance which has given me so much peace of mind through all of this.  I take my prenatal vitamins, I make myself eat and drink even when I’m feeling sick, but beyond that I haven’t worried at all about the baby that I’m carrying.   Thankfully once Ellie became more stable and my stress wasn’t quite so great, my cramps went away and other than just typical pregnancy related nausea and back pains, this pregnancy has been going as smooth as possible.

The baby is due at the beginning of March and if I happen to make it to March 4^th  then that will be the date of my scheduled c-section.  However, Payton and Ellie both arrived a little early so I’m not actually expecting to make it to that date.  Just based on my previous experiences, I would anticipate going into labor in late February and then delivering via c-section.  But, as I already said, it’s God’s timing so we will just wait and see when this baby wants to arrive.  The baby is already measuring big, which has been typical of my babies and is likely why they show up a little early.  

Despite all of our doubts and fears, we are now feeling excited about the arrival of the baby who we feel will complete our family and we can’t wait to meet him or her.  Ellie doesn’t seem to really understand about the baby, but big sister Payton is beyond excited.  Payton has always loved babies and she can’t wait to have another sister or brother.    She is hoping for a brother but said she would be happy with a sister too.  When Ellie is asked “Brother or sister?” she replies with “Sister” probably because that word is familiar to her.  Payton wants to name the baby “Car” if it a boy and “Carly” if it’s a girl.  We are going to wait until birth to find out gender but either way our family will be very happy with the new addition.  Babies are a blessing and we are feeling very blessed.

Update as of October 26, 2014:

My pregnancy is still going well.  Since I wrote this post, Ellie suffered another major stroke and we have been living in Texas Children’s Hospital for over a month now.  For the most part, Ellie is currently like a 6 month old, both physically and mentally.  So the thought of having another baby to care for in addition to her is still pretty scary.  But at the same time, we hope and pray that Ellie is doing much better by the time this baby arrives and we do see her continuing to make improvements.  And we know God will take care of our family and he won’t give us more than we can handle.  We are also very lucky to have the support of our family and friends and we know there are numerous people we could turn to if we need help.

At almost 21 weeks, I am still not really feeling this baby move.  But at my anatomy ultrasound last week, the technician reported that my baby was very active and that I would likely start feeling him or her move soon.  Everything checked out perfect with this baby except the baby’s kidneys are both enlarged.  Ellie had an enlarged kidney while in utero too but by the time she was 2 months old it had resolved itself and was normal sized.  So even though it is likely something that will resolve itself, they like to keep an eye on it so I am scheduled for two more ultrasounds later in this pregnancy.

Overall I would say this has been a pretty easy pregnancy so far. I’m feeling pretty good during this second trimester.  I pray this pregnancy remains uneventful and that this baby is born very healthy!  

And now a tacky bathroom belly selfie, exclusively for my blog readers.  This is the baby in the belly at 21 weeks and is actually the first belly picture I have taken this pregnancy.....