Tuesday, March 30, 2010

How 1 Procedure Turns Into 2

Before The Mud Pies Got Messy

Anna's appointment with the surgeon, Dr. Black, was today. I went there with an open mind and a lot of questions. He was able to answer them all and I was satisfied. He went back and looked at all of the tests and scans she has had so far. After talking about them he decided she not only needs the Nissen Fundoplication but also a pyloroplasty. The pyloroplasty is where they cut the pyloric muscle and then resuture it causing it to relax. This widens the opening from the stomach to the small intestine and allows the stomach to empty faster. The Nissen in kids with delayed gastric emptying can make the child worse if the pyloroplasty is not done at the same time. I have not scheduled all of this yet but Kenneth and I have decided it is the right thing to do. She will be in the hospital for 2-3 days. Dr. Black says he prefers to do these as an open procedure vs laparascopic and I am ok with that. Apparently there seem to be less complications with the open surgeries. Her incision will be about 2 inches long in the center/left center of her chest/stomach area. I have a lot of confidence in Dr. Black and if he and Dr. Ogunmola and Dr. Goff all feel she needs this then who am I to argue?

Monday, March 29, 2010

Dear Zoloft

My "I am no longer afraid of my own shadow" child

I have debated about whether or not to make this post but have in the end decided it is an important one to make. It is important because as I searched the Internet for information about kids and certain medicines I was unable to find anything positive. We have had a VERY positive outcome and I want to share that for other families who may be where we were.
I had blogged sometime in the past about Carly's anxiety. I am not talking about being afraid of monsters in the closet. I am talking about a child who was afraid to go to sleep at night because she was afraid the house would catch on fire, or that she would be kidnapped, or that she was going to die. She was getting up and checking the locks on doors and windows before bed. She was paralyzed with fear all of the time. She was afraid to kick the soccer ball at soccer because she was afraid of getting hurt. She was afraid to go on a boat for fear of drowning. She was afraid of planes because they might crash. We had to medicate her heavily to fly anywhere. So you see this was not just run of the mill kid stuff. We are and always have been very conservative about what she sees on TV and hears us talking about so it is not like she was constantly exposed to these horrible things. She does have an ICU nurse for a mom and a firefighter for a dad and a sister who is chronically ill though and those things are not going to change. She also has a strong family history of anxiety disorders and depression. Anyway, we had managed these things the best we could for a long time but it was becoming increasingly clear that even with all of our efforts things were spinning out of control and Carly was getting worse.
I took her to see Dr. Goff about it and he referred us to a child psychologist. Her name is Lisa Elliot and I am certain she came to us straight from heaven! She met with me and with Carly and then did some testing. Carly scored in the severe range for an anxiety disorder. Lisa cautiously approached me with the information and the fact that she really felt that Carly needed medication and therapy. I was all for whatever it was going to take to let my kid just be a kid. She has been so preoccupied worrying about adult things that she has forgotten how to just be a kid. We went later that day and met again with Dr. Goff. The whole thing was nothing less than divine because to get where we have gotten in the Cook Children's Behavioral Health Program usually takes anywhere up to 18 months and we got through it in about 2 months.
Carly was started on Zoloft. It is an off label use for kids under 12 but Kenneth and I are well aware of the risks and were willing to accept them. She was started on 12.5 mg and after about 1 1/2 weeks was increased to 25 mg. She is a different child now. Unless you knew her before it is impossible to know how dramatic the change has been. Carly knows why she is on the medicine. I asked her if she feels different now than she did before the medicine. She said yes. I asked her what feels better- this way or the way she was before the medicine. She says this way is so much better and that she never wants to feel the way she used to ever again. She goes to bed at night and when we say our prayers she is thanking God for all the things in her life and no longer prays for protection from the horrible things she was so afraid of before. She sleeps like a baby and is refreshed in the morning.
As far as side effects go- we have only noticed one. She eats a little more than she used to. It is not a problem for her because she is constantly on the go and is skinny anyway. We are trying harder to be sure we keep healthy snacks around for her also. That is it- we have not noticed any other side effects at all.
I know that not every kid will respond the same way and that for some kids therapy is enough. Carly is going to therapy as well. For us, this was without a doubt the right decision. Zoloft, thank you for letting my child be a child. I cannot thank you enough...

Friday, March 26, 2010

Life Outside The Bubble

Anna's appointment with the pediatrician went well this am. Her pneumonia has resolved and she is back to her usual self. He said there is a chance it was not aspiration pneumonia and that it was just a community acquired pneumonia that just coincidentally happened right when she vomited in her sleep. The other doctor thought it was aspiration. There will not ever really be a way to know for sure and in the grand scheme of things it really doesn't matter. Anna is still having episodes of vomiting despite all we have tried to do to stop it. He thinks that she needs the fundoplication no matter what kind of pneumonia it was. I am feeling a little more at peace about it today but will continue to pray that I will know what the right thing to do is. Our next appointment is with the surgeon on Tuesday. I am going with an open mind and a list of questions. I am not usually the type to take a list in with me but this time I will do it anyway.

As I had said before, our trip to Georgia was amazing. I really treasure the time I got to spend with my sister and her kids. On the other hand the trip opened my eyes to a lot of things that I had not really had to deal with before. Where we live and where we go to church and where my friends are and where I work are all my comfort zone, my "bubble." It is not often that I go outside that bubble. So people know me and people know us and there is little explaining about Anna. She is just pretty much accepted for who and what she is even if it is different. But in a new place the bubble was gone. I was faced with deciding when I needed to explain what was wrong and when to just keep my mouth shut. Anna is not disabled enough to fit in with the disabled crowd but also not normal enough to fit in with the normal crowd. If she was in a wheelchair or had the typical features of say a child with Down's Syndrome then there would be little doubt about the fact that she was disabled. People would still stare but they would mostly have their answer (I think.) If she were "normal" then there would be no need to explain anything. But Anna is neither of those things. So I feel the need to explain to people all of the time why she walks a little funny or talks a little funny or if there is a chance her shirt might come up I feel I need to explain the button. For example, we went to church with my sister. They asked how old Anna was and I said 2 but then had to explain why she needed to be with the 1 year olds and what her button was and why she talks a bit different... It is just hard to know what to say, how much to say, and who to say it to. At home things seem pretty normal but stepping outside the bubble I had to realize that things really are different for us. That was a tough pill to swallow. The realization was more painful than I had expected. I suddenly also found myself feeling more critical of myself and the decisions I make for Anna. I find that when I am having a difficult time I become more defensive and feel like people are second guessing what I say or the decisions that I make. The truth though is that I am second guessing myself because I am in unfamiliar territory and I am scared and I cannot put that on anyone else, that is all me.
So I guess I am still on an emotional roller coaster at times but God has given me a seat belt and assurance that he has the ride under control. In Him I will trust...

Thursday, March 25, 2010

Why I Walk

It is that time of year again for The Promise Walk For Preeclampsia. Team Watson has set a personal goal to raise $500 for The Preeclampsia Foundation. If you would like to help us reach this goal so that some day there will not be another family who goes through what we have been through due to this disease then please click here to make that donation. Your donation is tax deductible. I walk for Kenneth so that no husband ever has to fear for the life of his wife and child due to this disease again. I walk for Carly and Anna so that someday when they grow up and have children they will not have to fear pregnancy. I walk for myself because I vow not to remain unchanged by this experience. I also walk for all of the other families past, present, and future who have had their lives turned upside down by this disease. Preeclampsia entered our lives, uninvited, and has forever left its mark.

We moved Anna's appointment with Dr. Goff to tomorrow so I will update on it later. I did speak at length with Dr. Ogunmola (GI) about our inability to get past 350ml per night regardless of the rate. We discussed Anna's vomiting and aspiration. We discussed the possibility of using a GJ tube instead of a G tube but in his opinion they migrate out of the jejunum too often and they require around the clock feedings which are just not feasible for us right now or probably ever. He discussed Anna's case with the surgeon and they feel the fundo is really what needs to happen. We have an appointment to talk with the surgeon on the 30th. I just don't know what the right thing is to do. I pray that it will become clear.

I have so much more to blog about but work wore me out today and I need to go to bed. Say tuned tomorrow for a Dr Goff update, my feelings on people second guessing what I say about Anna, and how it felt to travel out of the "comfort zone". I know, the suspense is killing you...

Sunday, March 21, 2010

Fun In Georgia

We are still in Georgia and really enjoying our time here. The weather has been beautiful and the kids have had such fun playing with their cousins. It snowed at home so I am so glad we are here. The flight here was not too bad but it could have been better. Anna was quite fidgety but all in all she tolerated it pretty well. Carly was great and has finally conquered her fear of flying. Last Monday night Anna vomited in the middle of the night during her feeds and about 2 hours later had spiked a high temp. Kenneth took her to the doctor on Tuesday because I was pretty sure she had aspirated. Our pediatrician was out of town so we saw one of his partners. He said Anna just had "the crud" and was fine. She continued to run fever and on Friday I had had enough. She was coughing and rattling and just not being herself. I had tried to take care of the problem before our trip but my efforts were in vain. I ended up taking Anna to an acute care clinic here in Columbus and thank God we had a very nice doctor. Anna's o2 sat was 93% and her chest x-ray showed she had bilateral pneumonia. Just as I had suspected- she aspirated. She was given 2 antibiotics and is starting to feel better. She is finally acting more like herself. We have a follow up appointment with Dr. Goff on Tuesday. I suspect that the fundo is now in our future. I realize how lucky we are that the pneumonia was not worse and that she tolerated things as well as she did. We might not be as lucky next time. I am scared. I do not want another surgery for her and I have read so many bad things about the fundo- about the retching and things like that. I have also read lots of good things about it but I am still scared. I will be praying for wisdom and peace about it and that the answer about what to do will be clear. We are about to leave for church and then off for more fun today. In the mean time I will leave you with some pictures from this trip...

Wednesday, March 17, 2010

Dazed and Confused

If you happen to find this guy wandering around in a daze do not be alarmed. It is my husband, without his wife and children. He is not sure how to handle the lack of estrogen around the house (for 5 whole days). Let him wander around and enjoy himself, just please make sure he is home in time to pick us up from the airport on Monday afternoon. Thanks!!

Monday, March 15, 2010

Planning Ahead

Spring Break!!! I cannot wait until Thursday when the girls and I leave to go see my sister and her kids in Georgia. I am flying alone with the kids. Prayers needed here! This will be the first time for me to fly alone with the kids. It will also be our first time to really travel since Anna had her button placed. It took more forethought that I expected. We cannot just pack up and go anymore. We have to ship her food and stuff ahead of time because it is heavy and I do not feel like paying American Airlines another $50ish dollars when our bags are too heavy due to tube feeding and related supplies. Thank God for the flat rate USPS boxes. I was able to send everything for about $10. I had to order supplies ahead of time though and not that it was difficult, it just took more planning than I am used to. I am so excited to go though and I am beginning to think Thursday might never get here. I have not seen my sister since last summer and I have not ever seen her baby who is now 7 months old. I need some snuggle time with baby Charlie (who incidentally at 7 months weighs as much as Anna and wears bigger diapers than she does.)

Forgiveness has done such huge things to me that I never expected. I had spent so long being angry that I had no idea what the anger had done to me. I also believe when God took away my anger he began replacing it with the fruits of the Spirit. It feels so much better to bear fruit than to wither away like I was. The main thing I have noticed that has changed aside from the anger release is that I am losing my need to control everything and micro-manage. I think it stemmed from feeling like I had some responsibility for what happened to Anna- that I wasn't watching close enough or paying enough attention or asking enough questions while I was pregnant with her. Since her diagnosis I have been afraid to miss an appointment or a therapy. It was stressing me out so much and I didn't even realize it. I was so certain that my way to do things with Anna was the best and only way to do things. If someone gave the meds in a different order or did her dressing in a different order or didn't adhere strictly to her schedule or dietary restrictions I would freak out. I am finding that letting go of some of this is a nice thing. Anna will not die if things are not done exactly my way. Who knows, maybe someone else's way is better than mine. I even let my mother in law skip a feed one night because it was her judgement that Anna had eaten good that day and didn't need it. I didn't get angry. I trusted her ability to care for Anna and make good decisions for her. I think there had been so much time where I felt a lack on control that i was grasping at every bit of control I could find to try and keep from losing my mind. Along with forgiveness and acceptance have come peace and freedom. I am so much calmer on the inside and it feels so good. I have been watching some Beth Moore bible studies ( I am not sold on the people hosting these but I am sold on Beth). One in particular is called "Living Forgiving: Offenses That Devastate." It is really changing my heart as well. I have said for a long time that I was not angry at God for all that has happened. I have realized that I wasn't "angry" but I was shutting him out. As I have begun to let him back in I see how much I was missing.

Anna had a genetics appointment today. I am so sick of appointments and really did not want to go but I had promised Dr. Hernandez I would, so I did. I left there not knowing much more than when I went in. They drew more blood to look further for genetic micro deletions. The geneticist says she feels like Anna's CP explains a lot of things, but not everything and she feels there is some genetic component. In the end it doesn't really matter- you can't do much for genetic problems. I agreed to the testing anyway just because if something does show up it could help us ensure Anna gets what she needs as far as special services in school, etc. I was a little sad when the Dr said something about Anna "not catching up faster." I feel like she is doing phenomenally well and it kind of hurt my feelings. I know it was not meant as an insult or anything but for some reason it never really gets easier to hear your kid is behind. Anyway, the blood work will take at least a month to get back so I will not be sitting on pins and needles waiting on it to arrive...

Wednesday, March 10, 2010

The Magic Potion

How Anna Eats Spaghetti
(It may be messy but at least she is eating by mouth!!!)

Carly Says She Got Braces Today
(I call it an apple slice)

Things are going relatively well in this household. Anna was moved up into an age appropriate class in daycare this week and is doing well. She has already made some friends and seems to be joined at the hip with a cute little girl named Avery. All of her little friends are potty trained and Anna sat on the "big girl potty" at school today. She throws a fit when you put a diaper on her and only wants Pull Ups like her friends wear. I am sending Pull Ups to day care tomorrow, we shall see how it goes. It is not easy to find Pull Ups to fit her. She has been in a size 4 diaper for about a year now. I bought the 2T ones, we'll see how it goes. I was not in any big rush to potty train her but if they want to do it at daycare then I am all for it! She continues to make strides in speech also. She was completely uncooperative for Brad today though. She just shut down and would not do anything he asked. Next week is spring break so she will get a week off and hopefully the next time we meet she will do better. She did get her first nasty looking rash around her button. The GI had just commended us on how good it looked and then it went to crap in no time. I could not tell if it was yeast or infection or excoriation or what. I had tried the remedies I knew of- steroid cream and butt paste and neither was helping. So I had an idea (scary, I know). We use this SilverKare stuff at work on wounds. It is a mist that is basically water and colloidal silver. It is an anti fungal , anti bacterial, anti everything which I thought was probably like snake oil. Anyway, I decided to use it since it does not burn and it wasn't going to hurt. Within 2 days her site was completely healed. This stuff is like Holy Water!! You can supposedly drink it daily too but I do not want to turn blue which is what I think eventually happens so I think we'll just stick to using it on Anna's button site and maybe cuts, scratches, scrapes, and stuff of the sort. Do you have any magic potions?

Carly is having her first cavity filled tomorrow. I called to inquire about whether or not they would use nitrous. They happily will, for an extra $130 that insurance will not cover. Ummm, no thanks. They called her in some Valium and we'll see how that works...(If it doesn't work maybe she'll bite the dentist and hopefully score herself a free puff or two of the gas anyway)

Wednesday, March 3, 2010

Divine Intervention

I am not really sure why but I really thought that forgiveness of something so huge in my life was a process that would really take some time to complete. I even wondered if it was a goal I would ever attain. As I had posted before I began to say a prayer of forgiveness. I typed it up, printed it out, and taped it on my bathroom mirror. It was there staring me in the face every time I looked in the mirror. So every time I looked in the mirror I would recite the prayer because if I walked away from it without reciting it I somehow felt like I was cheating myself out of another chance to work towards this forgiveness. I now realize that forgiveness is a divine thing. It is not a process. It is a change of heart that comes from being obedient to God. He told me that I had to forgive and even though at the time I didn't really feel like it I prayed about it and the peace of God changed me. So what I thought would take forever has already happened. I am finished being angry. Forgiveness does not mean that I wish that things hadn't turned out differently or that what happened was ok or that I have to like what happened but forgiveness is no longer holding that person responsible. Forgiveness is freedom and it feels so good!