Friday, March 16, 2012

Getting settled in. FW, part 2.

The first night was really rough. Luckily, we started the night off with visitors, but then we had to get down to business.

Ella was off all seizure meds so she had a really hard time falling asleep…understatement. She didn't go to sleep the whole night. She ended up having a seizure at 7am, slept for about an hour and then had another one at 9am…and that was our night. We stayed up the whole night. We had both been awake 24 hours by the time Joe arrived at 10am to relieve me of my shift. I went home and slept, while my in-laws took the boys around Ft. Worth and my mom headed to us to help out.

(Ella NOT falling asleep)

(mommy and Ella watching Downton Abbey around midnight)

Thursday, March 15, 2012

Getting set up. FW, part 1

It's 12:44 AM and I'm sitting in a recliner in a hospital room. Seem's I've written a lot of posts from hospital rooms in the past 6 years. Yes, you read that correctly, six year ago I was pregnant with Ella. It's amazing how muchhas changed since that time. I had no idea what we would go through with the baby, or that I'd be sitting here, again, watching her hooked up to machines. As it gets closer to her birthday, I'm reminded of how faithful God has been to us over the years. It might not look like He was faithful, I mean…we have a severely handicapped child, but OH the ways he has been faithful is almost to numerous to count…maybe I'll do that in my next post.

For now, we sit in the hospital. I will say that it's kind of nice to have a change of scenery. We areat Cook Children's Hospital in Ft. Worth and I've loved the experience so far. The hospital and the staff have been wonderful. We have never spent much time in a 100% children's hospital…but it's pretty much amazing.

As I sit in my recliner (which I now realize is broken and can't lay back, ugh) I stare at my mother asleep on the guest bed and my daughter asleep in her hospital bed…and I'm thankful for 3 generations of women in one room (Sara, you and Mak are not forgotten, just not here). My mother has the strength and cool-headedness that I so needed this weekend. I mean, she's stayedat the hospital for 14 hours already with me, and is staying the night. She is so helpful, and even her presence is just helpful. I look at Ella, 5-years-old and as I think of my, now, dreams for her…it makes me wonder what my mother dreamt for my life. Probably not for me to have to sit in hospital rooms with my daughter, waiting for her to have seizures, but she sure raised me to be strong enough to handle it.

So, if you aren't on Facebook (or don't keep up through social media, or like to have things better explained) here are the details of what has gone on this week: (okay, there may not be manydetails, but there is some information)

We had decided to go ahead with Dr. #2's testing suggestions. We arrived around 11:00 AM on Tuesday. The first person we ran into was our old speech therapist, Sara, whom we have loved and missed dearly since she came on staff at Cook, it was such a blessing to see a familiar face!! We got registered, got to our room, and went through a lot of history and information, then it was time to get down to business…the EEG. Mainly, it reads seizure activity in the brain, but if you want to Google it and research more, feel free.

They glue little wires all over her head so that, hopefully, they can see where the seizure activity is originating from…we are still not sure of the answer.

Tuesday, January 24, 2012

Doctor #3, please come forward

Today was our 2nd Second Opinion. So, our 3rd neurologist to "interview" in 5.5 years. We've had the same neurologist since birth, but wanted to venture out and see if there were some other brain-guys out there that had other opinions…or at least better communication skills. (Don't get me wrong, I actually really LIKE our original neurologist, but we just never felt like we knew exactly what was going on or why he was doing anything. It's actually really sad and hard for me to let go of any doctor that I like…that's a big deal in the world of constant medical care.) So, today was Children's Medical Center (the Plano office) to see what they had to say. I need to take a moment and say that this was the HARDEST office to get into. In fact, dear family friends worked their magic to get us expedited, and it still took (what seemed like) forever. So, we meet with the doctor and he had a totally different approach. (Joe is wonderful and has been taking off work to do all of this with me…pretty sure we are going to burn through all of his vacation the first half of this year just for medical appointments…still a lot to do in the next few months!) As you can see I took all of my notes and reports and labs and more notes (these are just her neurological files…or things that relate to neuro, the girl needs an officeassistant! Luckily, we have JoBeth!) Dr. K lets us tell him the whole history and then reads some reports and gives us his take. He's very well spoken and explains things well. With each doctor we are learning more and more as they each have a different style and way of explaining…actually very helpful. After a lot of discussion on what we've seen and done already, he suggests that we go the route of the Ketogenic Diet, which has been known to slow down or stop the advance of seizures. We've heard about the diet before, but never gone into as much detail as we did today. We will meet with a nutrionist at Children's who specializes in the diet for children, andwill answer all of our concerns and questions. We aren't even sure how it will work for Ella since she has an odd eating pattern and can't chew and consume her food like a typical person. Then we will have a very extensive blood test done (complete with metabolic testing) to make sure that her body is capable and safe to be put through ketosis. It's really hard on a lot of the body and is even started in the hospital for 3-4 days before you can go home on the regimen. Then there are once a week appointments, which then get further apart, but with daily monitoring and testing. This can go on for 2-3 years, or longer, if the treatment works.
So….that's one option. We still have the option from Cook Children's to do the testing and check to see if we are a candidate for epilepsy surgery.

We have decided to check into both routes. We will begin the education and testing for the diet to see if it's something we can even do for her. Then in March (Spring Break), we will check into Cook Children's for a 4-day EEG and PET/MRI scans to see what exactly is going on with her brain when the seizures happen. We feel like doing both is our best way to collect all the information we need to make the best decision. If she qualifies for the diet then we will most likely go that direction first and then follow up with looking into surgery if the diet doesn't seem to be curbing the seizures.

Currently we haven't had a full seizure since last Thursday, 5 days, and we'd like to go back to only expecting 1 every 4-6 weeks. Then we'll have some time to make some good, educated, decisions.

Thank you for all your prayers!!

Monday, January 16, 2012

Seizures, and a new Doctor

So, I quit writing on the blog because it was exhausting. So much emotion to write out what I was already living every day. I'm not sure I can write it out anymore, but since we've enlarged the Seizure chapter of our lives, I think it's easiest to write it all here, rather than try to piece it together on Facebook or over phone calls. As you may know, Ella has had seizures since just before her 3rd birthday. We have been managing them with medications, but they have started to get out of control. In 2009 she had 3 seizures, that we attributed to infections and just thought that whenever she would get sick she would have them. In 2010 we realized that they could happen without a fever or infection…and her meds increased. In 2011 we started off with an additional med…and another spike in seizure activity. She was averaging once a month…until December. Between 12/12/11-1/11/12 (4 weeks) she had 6 seizures. We have had the same neurologist since NICU and have decide to go outside the Medical City offices to find an actual Epileptologist (specializes in epilepsy, instead of just neurology). We found an amazing doctor at Cook Children's Hospital…yeah, we have to pass Medical City and Children's Medical to GET to Cook's, but it was the first place we could get in and the doctor was so wonderful. Here are some of the points from the appointment today (these are going to be scattered and may not be in sequence…but here they are):
  • her seizures will most likely be lifelong
  • he would like to switch us off of the 3 current medications (Trileptal, Keppra, and Vimpat) she takes and put her on only one (Clobazam/Ofni)
  • Ella may be a candidate for surgery (a brain surgery to remove the parts of her brain where the seizure originate)
  • the actual part of her brain where the seizures start is between the damaged/dead brain tissue and the healthy tissue…don't ask me what it's called because I can't repeat it…started with a "g"…I'll research it
  • He said her seizures are more than likely a result of the original brain damage caused by her meningitis at birth…it's amazing how much the illness at 12 hours old has effected every aspect of our lives.
  • We were pleased that he seemed surprised that the seizures took so long to surface after the NICU…we were given a gift that he dubbed a "honeymoon period" that we didn't even know was a gift of a seizure-free period of life. (find blessings in small things)
  • there is no plan to actually CURE her epilepsy, the plan is always to manage the seizures
  • Dr. Malik thinks that she might be having small seizures during the day that we aren't aware of…but testing will confirm this and it's not something we can deal with till we have the test results
  • The plan is to do a 3-5 day EEG (yeah, in FW…this is one of the most exhausting things for my brain right now), a PET-scan, and some other scans…more as he sees needed. They will have her off all of her meds so a seizure will most likely happen, which we need to see exactly what her brain does. Out of the 5-10 EEGs she has had in the last 5.5 years, I think this one might actually tell us something! (I may need my own brain doctor after being in a hospital for that long with her hooked up to cords…but I can't worry about tomorrow)
  • There is also the option of some seizure diets, but we'll get there after the tests as well…if surgery doesn't look like the best option.
  • He believes that the meds are lessening the intensity of the seizures, but the concern is that they are ramping up in number and frequency.
  • I'm most excited about going from 3 meds to 1…they don't prevent the episodes, but decreasing the intensity would be nice.
I think that's all I can think of at the moment. I'll update you as we find out more. I guess I'm back to blogging…we'll see. Please feel free to ask questions…or just help us think of more questions that we haven't asked yet!!

A Few Updated Pictures

Ella has been doing great in Kindergarten this year. We are so proud of her and know that she has lovedgoing full days. We started her in a public school, but at the Christmas break switched her to a private school, Chase's Place and have LOVED it so far.

Will has shocked us by his absorption of
everything. He learns VERY quickly and loves to know about everything. He can count to 100, knows all of his letters and what they sound like and what begins with them. Questions are of no shortage with our giant 3-year-old. When he turns 4 in a few weeks we'll get to find out exactly where he is on the charts. He thinks he's a great comic and tries to do anything to make us laugh…which of course, makes us laugh.

Jonathan is already 17-months-old and tries to do EVERYTHING his older brother does. Fortunately he has a very hard head and a high tolerance for pain…so he just bounces around happily behind Will. He is by far our most active, because there is always someone to show him what he could do if he was just a little bigger. He loves Ella. Her name was his first word and he always looks for her and announces her presence. If you ask him to kiss or hug her he never denies her some love…she's the only one he consistently loves on. It's heart warming. He may be quick on the physical development, but he's slow to speak. Besides "Ella", "no", "bubba" (Will), "dada" and "papa"…he's slow to say much else. I'm guessing he'll pick up on more as soon as he slows down enough to care.

Friday, May 13, 2011

My Beautiful Little Ella,

You are JOY. When someone tries to define the word they can see your smiling face. Your daddy and I believe it’s because, in those first few days of your life, you got to sit in the lap of Jesus and let him hold you while we couldn’t. I believe that you have a special angel who walks you through life and God has allowed you a perspective that only He can give. The rest of us see so much bad in this world, but not you my little girl, you only see the happy things. I thought of this today when you were getting a shot (ironically a meningitis vaccine) and you only flinched. A few hours earlier Jonathan got shots and he cried and carried on, but not you, you are strong in the face of anything. We’ve heard it said that so little can affect you after all that you have already been through in your 5 short years, but either way, it is a blessing. I often read about special needs children who can’t find comfort, and I’m so grateful for the unending joy that you have every day…it’s often you who will get me through the rough times, instead of me helping you. Well, maybe we help each other. You are beautiful, yes on the inside, but that shines right through to your outside. People often say that you resemble me as a child, so maybe I was cute too, but there is something so special about you to everyone you meet. I hear the phrases “look at those curls!”, “you have the most beautiful eyes”, and “wow, you are just so pretty” on a daily basis. Sometimes it is funny how many people will stop us and comment on you, but we know that it’s God shining through you. It’s funny that your head actually measures very small (they call it microcephaly) but no one would know for the head full of beautiful curls on your head…see, God really does take care of the little things. You challenge me. I have never looked at my faith the same since the day you were born. It’s funny, but I have often felt that I don’t deserve you. That someone could have done better or would be more equipped to handle all of the challenges, but then I realize that God made me so specifically to be your mother. Oh Ella, had I known that I would get a gift like you it could have changed who I was in life, but God knew all of this and here we are…you and me. It’s not easy. Most days are just our “normal” but there is at least a few times in a week that I realize my life is so different from so many people around me. My life consists of the words: therapy, brain development, seizures, wheelchair, handicapped accessible, aspiration, and all of the terminology that I never knew I never wanted to know…proprioceptive…and I say those words a lot. I have been asked at least once or twice if I’m a nurse because of the lingo that I can speak when talking about you, but I just laugh, since I barely went to college. You are a gift. A true gift for more reasons than I can list, because I think I don’t even know most of the reasons yet. You have caused me to admire and love your father more than I thought possible. Do you know how much that man loves you? He has prayed for you without ceasing and he believes in you (he also never gets mad at you or disciplines you, even when you are totally misbehaving!) You will make your brothers stop and think about everything in a different light than their friends, and I hope that they are better men for being your brothers. Mostly you are just love. You make my ability to love increase in ways I didn’t think were possible. You have the knack for causing random people to fall in love with you without saying a word. You are my perfection in this imperfect and sinful world. Oh, you have a sin nature; don’t let anyone tell you otherwise. We do pray that one day you will come to know who God is in your life here on Earth and that you will have the realization that you are a sinner, in need of a Savior. That you will know how important the life, and death, of Jesus were for all of us…and that you will accept His free gift. We want so much for you sweet child. For now, we will enjoy every day that God has given us as your parents, and pray that we do the very best that God has called us to do.

Wednesday, May 11, 2011

My Sweet Jonathan,

You are my baby, and for now, you are my last. You are a joy and your smiles brighten even the middle of the night. I have loved trying to figure you out and try to get to know you better. I remember being pregnant with you and being so scared not to be able to love you as much as I thought I's amazing how God just makes our hearts bigger. You are already so much of a have mastered crawling and cruising and now you are trying to stand on your own...I'm afraid it won't be long before you are walking, and then you are no longer a baby. 9 months have flown by. I can remember every bit of your birth and how much I already loved you when I saw you. You had the greatest pouty lips and a sweet cry...and you were mine. I have loved snuggling you and learning how to make you laugh. You have a GREAT laugh. You seem serious a lot of the time, like your brother was, but when you think something is funny you really let it show. I look forward to getting to know you better and seeing what kind of a man God has created you to be. You were a perfect way to wrap up our babies.

My Dearest William,

You are my buddy. We go almost everywhere together and have our routine down during the week. Speaking of routines, you hate it when one is changed. You like to go the same way to all of your familiar places and you like it when everything is where it should be...except your toys. You are so adventurous. I love to watch your excitement with anything new. One thing you really hate is loud noises. You've never like lawn equipment, anything being blown up or anyone to talks or laughs too loud. You seem to hear everything, except us calling your name. Most people would say that you are a good boy, and you are, but you have a tendency to want to do things your way and in your time. Daddy and I work very hard at teaching you why you need to obey and what role God plays in teaching us obedience and submission. You learn most things very quickly, but I think this one may take a while. We pray that you learn the easy way and not the hard way. You have loved learning who God is already. You love to read the bible, you love the stories, and you have even memorized some scripture. Daddy has taught you John 3:16 and Matthew 5:8...and he's working on a new one, he wants to make sure that you hide God's word in your heart, even at your that you will always know truth. I pray that you grow to be a man like your father. May you be gentle and kind, giving and a good steward with your time and resources...may you love people, but know that God and your family come first and second. You are so curious. You ask a MILLION questions. Even your teachers at school and church notice that you are smart and you want to know everything, about everything, and why! You are a joy for me. You are so much like our first child because you are getting to do so much first for us. We love watching you grow up to be a young boy. We pray that you will be a leader for Ella and Jonathan, may you always love them and take care of them. We pray that you and Jonathan will be close friends and always be able to count on each other. May you always cherish Ella and learn from the life that God designed for her. You are such a wonderful 3-year-old and I look forward to watching you develop into a wonderful young man.

Sunday, May 08, 2011

Mother's Day

Mother's Day has been so special since my very first one. I remember a friend telling me that it didn't count unless I had already given birth to Ella, but I disagree. Anyone is a mother who has given birth to a child, adopted a child, lost a child or been a mother-figure to anyone along the way. It's not the child that makes you a mother, it's the heart of the woman. My first Mother's Day Ella was only 4 days old and had just spent her 3rd night in the NICU. Re-reading my posts from that day and she had gone from "critical" to "guarded"...oh, those emotions. A child I was afraid to love too deeply, for fear she would be gone at any moment. I hadn't even had a chance to hold her long enough to even know her...I was a mother, even if I couldn't touch or talk to my child. Now I'm a mother of three sweet and very different children. Ella, well, she's just Ella. I don't know how to put into words what being her mother has meant to me. She has taught me more about myself, Joe and my loving Savior that I ever thought one little person, who doesn't speak, could do. She's an earthly angel. Sent to bring so much joy and hope to my heart. It's a challenge to know what to do to be the best mother I can be for her, it's not easy and I'll never try to lessen what we go through, but I don't know any different, and for that I thank my Lord because He was gracious when He gave me her first. Will, oh my goodness I had no idea that a "healthy" and "typical" child could be SO much work!! I have often said that Ella is my easy kid...and Will makes this very obvious. There are many challenges to raising a special needs child, but to any mother raising a very typical boy...the challenges never stop, or slow down, or freeze, or obey, or just sit quietly for one minute so mommy can think...and he's pure love. He loves to hug and cuddle and tell me how much he loves me. God knew that following Ella I would need someone who would talk to me (and boy does this kid talk) and give me all of the things that my heart missed with Ella...he gives me so much verbal input...enough for both of them! Adding Jonathan has made us very complete as a family. He's mild mannered like Ella, talks a fair amount already (no real words yet, but he's trying to learn from his big brother) and working hard to keep up with Ella and Will by crawling everywhere and doing everything they do. He's active, but he's also fine to just relax...he's my baby and he always will be...and for that I'm grateful. He's a happy baby. Will adores him and has never asked for us to take him back. He wants to be the first to go in and talk to Jonathan when he wakes up and Joe and I have prayed consistently that they will be friends to each other. We know that God provided a buddy for Will through Jonathan, and we will be excited to watch them grow in knowledge of God together. They are my children. They will stretch me and challenge me in ways I can't even imagine yet, but wouldn't trade any of the rough days for not being a mommy. I don't think I ever realized in my early 20's that I was created for a job so perfectly. I have made a lot of mistakes in life, but my children prove to me that we have a loving God who will still grant us small miracles as we grow to help us grow even more.