Crystal Hewitt's Journal
Written Feb 26, 2014 2:22pmToday's appointment with the Neurosurgeon went ok. We got to see the new Neurosurgeon that took Dr Smith's place, his name is Dr. Skarli.First Dr. Skarli checked out Ellington. He asked her to jump, asked her to walk and then checked her toes, feet and legs. He said that she looks very good and like she is doing excellent. We explained why the MRI was ordered (due to the increased kidney infections and kidney reflux) He then pulled up Ellington's MRI on the computer and showed us what her spine looks like. The above picture is the MRI on the screen with him holding up a spine sample of what a "normal" spine should look like. He said that Ellington's does come longer than normal, because she has Spina Bifida. He said that all children with Spina Bifida have spines that go longer than normal. This was good, because this was one of Dr Ehrth's concerns with the MRI.
He said that all children with Spina Bifida also get tethered cords. He said that he never does anything unless it's causing issues. He said that she is acting great, but there is concern with the kidneys. He said that she does have a little spot towards the bottom of her spine that is like a little pocket of fluid. He said it may be causing the issues, it may not. He said that the nerves for the kidney and bladder are towards the bottom of the spine so it might be indeed causing these issues. He said that he would talk to the urologist about his concerns and then they come up with plan together. He said that he is leaning towards surgery to correct this. We did hear all the details on the surgery (which we will share later if we have to go through with it). But for now he said to go ahead and get the Urodynamic test completed and then come back to follow up with him in a month. At that time he will let us know what him and Dr Ehrth (urologist) have decided is best for Ellington. If they do decide back surgery at that time, then surgery will be scheduled in around 2 weeks from then. There are many risks with this surgery as of any surgery you have, and we of course would rather no surgery. We are trust is in our God that He is going to watch over her and give the doctor's the wisdom to make this decision.
Daddy Hewitt and I still have many questions, but we are trusting in our God that He is going to continue to heal Ellington. If we are going to have to go down this road of surgery, then we know that God is going to help us through it. We just of course don't want her going through it.
As far as "did you like the new doctor?" Well, hard to say from first visit. He seems like a good doctor. We did like that he said, "She is your daughter, but she will also be mine." He meant that he is going to look out for her just like we do, for her best. That was great to hear.
It sure is hard not to worry as a mommy/daddy. We don't want any steps backwards for Ellington. We have prayed so hard for her to pee on her own, she is. We prayed so hard for her to be a walking testimony of who our God is and she IS. :) Our God is amazing and wonderful. He CAN heal and if she has to have this surgery, then I know that He will have her in His hands just like He has this whole time. But, it's hard to talk about this surgery without getting teary eyed.
When I was about to update Caringbridge, I first read the following devotional:I am leading you, step by step, through your life. Hold My hand in trusting dependence, letting Me guide you through this day. Your future looks uncertain and feels flimsy - even precarious. That is how it should be. Secret things belong to the Lord, and future things are secret things. When you try to figure out the future, you are grasping at things that are Mine. This, like all forms of worry, is an act of rebellion: doubting My promises to care for you.Whenever you find yourself worrying about the future, repent and return to Me. I will show you the next step forward, and the one after that, and the one after that. Relax and enjoy the journey in My Presence, trusting Me to open up the way before you as you go.Deuteronomy 29: 29 The secret things belong to the Lord our God, but the things revealed belong to us and to our children forever, that we may follow all the words of this law.(Study Note: There are some secrets God has chosen not to reveal to us, possibly for the following reasons: (1) our finite minds cannot fully understand the infinite aspects of God's nature and the universe; (2) some things are unnecessary for us to know until we are more mature; (3) God is infinite and all-knowing, and we do not have the capacity to know everything He does. This verse shows that although God has not told us everything there is to know about obeying Him, He has told us enough. Thus disobedience comes from an act of the will, not a lack of knowledge. Through God's Word we know enough about Him to be saved by faith and to serve Him. We must not use the limitations of our knowledge as an excuse to reject His claim on our life.)Psalm 32: 8 I will instruct you and teach you in the way you should go: I will counsel you and watch over you.
Wow. He sure has His way of communicating STRAIGHT to me at times. We don't know the future. We don't know what the plan is going to be in a month. We don't know how surgery is going to go IF we have to go through it. But, we know one thing, God is there, guiding us, loving us.
Love you guys. Please keep the prayers coming for Ellington! She appreciates them and so do we!
On another note, while at the Neurosurgeon appointment, the Dr asked me if I would be interested in being the leader on a Spina Bifida mom's group or at least having a Spina Bifida blog for moms out there in the area. He said that he saw 3 children with Spina Bifida the other day and 4 today. He said that there should be support for just Spina Bifida moms to talk, share and to be there for each other. He said that I have a lot of encouragement to offer. Wow. I am going to pray about this and will let him know. CRAZY thing though, when I was pregnant and we had just gotten the news about Ellington having Spina Bifida I remember Daddy Hewitt and I going to our friend/pastor's house, Ken and just sitting there crying with him. He was trying to make it make sense, "Why would God do this?" He mentioned while we were there, "Maybe God wants you, Crystal to speak to Spina Bifida moms one day!" I said, "NO! Ken, I don't want to do that." Well.....maybe this is God's push....and I will follow if that is what He wants me to do. WOW. Crazy how God works isn't it? Not our plan, but His.
Written Feb 21, 2014 8:10pmThis morning, I was a little on edge, but I found that I wasn't really worried as much as I had been about today's appointment with Urologist. This morning started out with Emerson being fussy and clingy, so I decided to set up a morning appointment before taking Ellington to her appointment. I feel that he has been fussy for the last couple mornings and I have been thinking it was teething, but then with my focus on Ellington I wanted to take him in to make sure it hasn't developed into anything else. He has a double ear infection. Poor little guy! We got the antibiotics picked up and then dropped him off at grandma's again to take Ellington to her appointment.We got Ellington to her appointment and I felt like I was going to bust with all the questions that I had. I began asking lots when she was doing the ultrasound. I didn't understand "Why now?" "Why did it show on the MRI but never shown before on an ultrasound?" "What caused this to happen?" Along with many more...
But, we did the ultrasound on Ellington and checked how full the bladder was and measured it. The nurse taught me how to Crede' her and we both tried several times and Ellington didn't pee. We then tried taking her to the bathroom to see if gravity would help us out by sitting on the potty. Ellington didn't like this at all. We aren't home, in the doctor's bathroom, that was for adults. We tried standing her up with a cup to catch it, tried warm water, running the water in the sink, etc and there was nothing. The nurse then knocked on the door and asked us how it was going, and we responded with "Not good." She told us to come on out into the room because the doctor had finished surgeries and dropped in the office and wants to talk with us.
The urologist started out by saying, "I didn't realize that Ellington was put under for the MRI." I said, "Yes, they had to do that because awake was not going to work." He said, "Well, that explains why her bladder was distended. That makes me feel much better." Oh I loved these words today. I knew God was going to work this out. I knew He was in this and for me not to worry. What a relief! Thank you God for taking the cath away!
The urologist continued in teaching me how to Crede' to make sure that I understood how. He tried to do it a little on her and Ellington was so upset and worried that they were going to "Check her pee-pee" (cath) so he couldn't get it to work. He suggested that I try to do it casually at times on Ellington maybe when changing her diaper or if I do get her to sit on her little potty then do it as she is sitting there. He went on to say that he is really wanting to get the Urodynamic study. He said that this will show him a lot of information about Ellington's kidney and bladder. He said that there are several things with Spina Bifida kids that we just need to watch for to be proactive. He said that we don't need to stress, he said that he feels good about Ellington's kidneys and how strong and good they look and that's most important. He also said that he feels good about her bladder too. There is a chance that Ellington's sphincter muscle might be too tight and not letting her pee fully and not empty out the bladder fully. He said that he is going to try Ellington on a medicine that actually relaxes that muscle so we can see if we think that she is emptying. Also, the Crede' might work with this medicine once that muscle is relaxed. We are going to try this and then follow up with him in a couple weeks.
In the meantime, I have an appointment with the Neurosurgeon. I don't know if i have mentioned yet or not but the Neurosurgeon that Ellington has seen since before birth left the office and moved to Greenville, NC. We were very saddened to say the least because he was really the best there is. There is another doctor that has taken his place and that's who we are set up to see on Wednesday to get the MRI read to find out about the spine being longer than it should be and if she has a tethered cord.
Also, we are still waiting on an appointment for the Urodynamic. I hope to get a phone call back next week with a date. I have spoken to two mom's of children with Spina Bifida and they have both suggested I take Ellington to MUSC Spina Bifida Clinic instead of Greenville. They take their children there and are very happy. I am praying that God will lead me to the right facility to get the best care for Ellington. I feel beyond blessed to have the doctor's that we do for them. They are all really great doctor's. And the therapist, I can't even describe how wonderful they are. They have become a special part of our family for sure. I do believe the God placed these perfect doctor's and therapist in our path. Now, I am waiting on the push from Him on if I need to stick to Greenville Spina Bifida Clinic, which I had a friend that used to work there and says it's a great place, or if I call MUSC SPina Bifida Clinic to set her up there for the Urodynamic and get to see the other doctor's there. Either way, I hope that we can get this test done and behind us soon.
So...things to pray...
1. PRAISE for NO CATH! Thank you! Thank you! Thank you!
2. Pray that Ellington will NEVER have to be cathed on a daily basis.
3. Pray that Ellington has normal Bladder and Sphincter muscles that operate like a normal child.4. Pray that Ellington has a GREAT MRI and there will be no issues by her spine being longer than it should be. And that she doesn't have a tethered cord.
Thank you for praying with us! Look what God has done. We give Him all the praise and glory!
Please keep the prayers coming, this appointment down, few more to go.
Update on Paighton, she is doing better. She hasn't had any more episodes. She will be staying over night at the hospital for observation. This was so scary! She had a total of 6 episodes this am and then had to be brought to hospital in ambulance. She would literally stop breathing. The doctor's think she might of been chocking on mucus. I know it's going to be hard for them to let her out of their sight just being worried that it might happen again. Just pray it doesn't happen again.
Thanks so much!Love,Mommy Hewitt
Written Feb 21, 2014 9:31amAttention prayer warriors,
Our best friends, Loren & Ashley, are headed to the hospital as we speak to take their little princess, Paighton. She has been coughing up phlegm and choking to a point of turning purple.
Please join with us in prayer as we lift up our friends and their little girl, Paighton.
Until next time,
Song - All Sons and Daughters "Great are you Lord"