Merry Christmas and Some Other Stuff

A few days late, but Merry Christmas. We had the best Christmas here and it was even a White Christmas. I honestly cannot ever remember having a White Christmas so that was a welcomed change. The drive home from work on Christmas Eve in the ice which should have taken 45 minutes and ended up taking 4.5 hrs was not fun but I made it home anyway so that was all that mattered. I was thinking at one point I would be spending the night in my car in the WalMart parking lot that night but I was actually not too worried. I had a full tank of gas, a cell phone & charger, a Diet Dr. Pepper (most important element), and a DVD player. I was set if it had to be that way. Luckily after a few hours my husband made it to rescue me and we started the treck home. It was only 12 more miles but 12 I was not sure we would make. I was so happy to be home. I quickly go the kids into their jammies and into bed. Kenneth had to be out working wrecks and rescuing people so the female half of Santa put all of the toys together. I was proud of what I was able to accomplish but can honestly say I do not care to use another screwdriver again for a very long time. We spent Christmas morning at our house and then spent the rest with family at their houses. It was low key and so very enjoyable. Carly really seemed more into Christmas this year than ever before. I was not really sure if Anna had any concept of what was going on but she woke us up on Christmas morning and said, "Tree!" so I guess she understood more than I thought she did. For whatever reason Carly wanted an apron and chef's hat so that is what they are wearing in the picture. We rode the 4 wheeler around in the snow and it was just gorgeous that morning. It made every payment we have made on this acreage worth it. Anna had her 2 year old check up and shots today (about a month late, but oh well.) She is up to 24 lbs and 37.5 in tall. That is 20% in weight and 100% in height. That is the highest percentile she has ever been!! She had a stretch where she had stopped vomiting and we were thrilled but she has started it again. She is going to start on low dose Erythromycin next week and we will see if that helps. I know her gastric emptying scan was normal but I still am not convinced that she doesn't have it. The days that she pukes it is not just tube feeds but also food from many hours before. The study showed she did not have a problem on that day. She may not have the problem everyday though, some days will inevitably be worse than others and I think the test happened on a day she was not having problems. Maybe that sounds crazy but to the girl cleaning the puke (that's me) it totally makes sense. She gets Miralax every day too but still gets constipated at times and I think that also plays a factor. Anyway, we will keep moving along until the solution is found. Carly has been a totally different kid since she has been out of school for Christmas break. She went from terrible behavior to the best I have ever seen out of her. I really think school is harder on her than I imagined and also that she picks up a lot of bad habits at school. Homeschooling is not an option for us so I guess we will just have to learn to handle the behavior the best that we can. I am thankful for these good weeks because it reminds me that I do have two great kids and that we are doing a good job parenting them and that they do know how to act. I was really beginning to think I was missing something with Carly and that I was not doing a good job because she had taken a sharp decline. I guess all kids go through good and bad periods and I am really enjoying the good! I hope everyone had a Merry Christmas and also has a Happy New Year! My brother in law will be leaving on New Year's Day for a 6 month tour in Iraq. Please keep him, my sister, and their sweet children in your prayers, they are going to need them...

And The List Just Keeps On Growing

I cannot believe Christmas will be here in 3 days. I was sad that we did not get to go to church last Sunday. Anna woke up during the night running a high fever so I decided not to bless the church nursery with whatever she had. I think it is just a cold because she has had a cough and snotty nose since then. Carly has it too and actually lost her voice one day which was not really all that sad. Kenneth and I are both finally off on Christmas day this year. I think the last time we were both off was like 4 or 5 years ago. I am so excited that we will get to be together on that day. Santa will be happy too since he won't have to make a special trip to our house this year either a day early or a day late. It is such a good thing that he and I have open lines of communication! Carly wants a Nintendo DS (among about a million other things). The list started out short but it was written in November and has long since grown to the length of a roll of toilet paper. Anyway, she politely told my mom that she knew "If Santa doesn't bring me a DS I know you will. Nana, I know you won't let me down." Santa had already received AND PURCHASED her previous request so it looks like the DS falls on Nana's shoulders. Nana had to take back the already purchased gift because she just can't stand to let the little girl down. I guess that's what grandmas are for. Anna continues to amaze us. Her speech is better everyday. She is even occasionally trying to put 2 words together. I love to hear her say "I eat." She is also now able to say "wub ew" (love you) when I tell her I love her. Those are the sweetest sounds I have ever heard. Her favorite word the past few weeks is "ook" (look). Brad continues to work hard with her and we are so thankful for that. I fear the day when she turns 3 and we have to give up Brad. He has been amazing. We are also strongly considering starting Anna in daycare. I had really been opposed to the idea but we have decided it is time for her to be around other kids. She will be enrolled full time but will likely go more like part time. Now that nutrition is a sure thing I am more confident we can keep her well which is what I was so afraid of. I think being with other kids may help her developmentally too. She will be going to the same place Carly went for 3 years. They already know Anna there and I feel confident they will love her just like they did Carly. She will be in the 18 month old class since that is more her level right now. We will see how she does and progress accordingly. I am terrified but at the same time know in my heart it is best for her. I took her up there to talk to the director and Anna cried when we left. She wanted to stay and play. That helped me know it is the right thing for her. After my last post we did have one puking incident so we had to go back to 9 oz. it might have had something to do with her cold but 9 oz is still pretty good. I am now officially a pro at cleaning puke in my sleep (not too much different from the old college party days I guess). On a sad note...a guy I work with lost his 3 year old grandson yesterday. The little boy climbed a dresser which had a tv on top of it. He was trying to get a movie. Instead he pulled the dresser and tv over on himself and it crushed and killed him. Please pray for the Robles family as they endure such a tragic loss. They had just buried their daughter in law a week prior to this. She died after many days on ECMO after catching the swine flu. She was pregnant at the time. She did deliver a healthy baby prior to her passing. It is not ever easy but especially not at this time of year. My coworker had one request. If you have a tv on a shelf or bookcase or dresser please bolt it down and bolt the dresser to the wall. He does not ever want another child to die this way.

Normal???

The gastric emptying results are in- completely normal. I am relieved and for the time being we will just keep everything as it is because it is working. Anna is eating some during the day and now taking 10oz tube feeds over 1.5 hrs at night. She is tolerating it fine. We have not had puke in quite a while now. I know that giving a child an adult dose of a medication (Prevacid) is not without consequence but I feel the consequences of surgery are much worse and the risks much higher. So for now, things will stay as they are. Carly is doing better also. Apparently taking a kids toys away will get their attention. So far she has gotten a toy back all days except 1. I had to go to Wal-Mart the other day. I generally am of the opinion that Wal-Mart is a parent's hell. They have everything your kid might want and they have strategically placed it where your child is sure not to miss any of it and is sure to drive you to the depths of insanity pleading for you to buy it. You either are weak and give in or stand strong and become "that mother" with the fit throwing children. Anyway, it was just Carly and I at Wal-Mart that day. We were in that 9th circle of hell for 2 hours. She did not misbehave even once. I was so proud of her. Her school Christmas party was today and we have a fire department tonight. I love this time of year. After the party tonight we will be delivering gifts to the less fortunate kids in this area. It warms my heart to be able to help them and I am quite certain the blessing I get from helping is far greater than any gift they get from us. Again I realize I am blessed beyond measure!

Gastric Emptying Scan

Anna had her GES yesterday. In case you ever have to have one be prepared- it is long! She had to eat this nasty mixture of eggs and chicken and rice soup mixed with some type of radioactive substance. I could not believe she actually ate it. I guess if you keep a kid NPO long enough they will eat anything. Anyway, she ate it and then the test began. They put her on this table and slid her under a camera and took pictures. The pictures took 1 minute for each series. They took them at 1 minute, 5 minutes, 5 minutes, 5 minutes, 15 minutes, 15 minutes, 15 minutes, then we had an hour break then more pictures then 30 minutes then more pictures. She had to be standing up between pictures and nothing to eat or drink. She handled it so well, as she always does. She kept signing "more" every time we took her down off of the table. It is nice but kind of sad how well she does in the hospital setting. She is not afraid of anything there and does not cry because she is so used to it. In case you were wondering- radioactive eggs make for some nasty kid gas!! We should have the results some time next week. It looked to Kenneth and I like none of the food had moved out until after the hour break and then it appeared to be moving nicely. I think Dr. O said something like 50% of the food should be gone at one hour and it did not look like we met that but I am certainly no nuclear medicine interpreter. In Carly news- her behavior was getting out of control and after trying all I knew to do to make it better it just wasn't improving. She has been so sassy and flat out disrespectful. I finally had enough and took ALL of her toys away from her. They are in my room which incidentally now looks like a bomb went off in there. She can earn them back at a rate of 1 toy per day. If at bedtime she has had mostly good behavior for the day she gets to pick a toy to have back. If she has not behaved that day we will take a toy back. We are going on day 3 and so far it is going well. She has made a dramatic transformation into the kid I know she is capable of being. I know a lot of her bad behavior is my fault. I have been overindulgent trying to make up for the fact that we have had to spend so much time and energy with Anna. I am vowing to do better with her. I think it will be easier now that Anna is sleeping, I am less tires, and Anna is kind of "settled" (for now). I know that I have to correct this now or it will only get worse.

Happy Second Birthday, Anna Banana!

Anna turned 2 on December 3rd. I had to work that day but spent a lot of time reflecting on the day of her birth and the events that have followed. These have no doubt been two of the hardest yet most rewarding years of my life. As I lay in a hospital bed day after day, week after week, month after month trying to get to a place where Anna could safely be born healthy I only dreamed of the moment I would finally get to hold her. I knew that if only I could make it to 30 weeks, then 32 weeks, then 34 weeks, then 36, then 38 that I would be able to bring home a healthy happy baby. Nobody ever tells you that making it full term doesn't guarantee you anything. So if there is one lesson life with Anna has taught me thus far it is that nothing in life is guaranteed. It has been hard and exhausting and an emotional roller coaster but I wouldn't trade a second of it. Because of this journey I have laughed harder, cried harder, dreamed further, loved stronger, and believed more. I have not only watched Anna grow but I have watched myself, Kenneth, and Carly grow also. We have pulled together and we have triumphed. Happy Second Birthday, Anna Banana! We had a small party on Sunday with mostly family and it was perfect. The best part was that it was not at my house and so when it was over it was not my mess to clean up. Anna ate like a pig all day and I loved every minute and every bite of it.

And in other news...We finally had our appointment with GI. I was able to voice my concerns over how things were handled after the tube placement and with the vomiting, etc. and really felt my concerns were heard and we were able to remedy the situation (I hope). Anna will be having a gastric emptying scan on Thursday. If she is emptying OK then she will need a Nissen Fundoplication. If she is not emptying OK then she will need low dose erythromcyin and if that does not work or if she does not tolerate it she will have a dilation of the end of her stomach. I am not sure what the technical name for that is. She is also getting some granulation tissue at the button site so we are using steroid cream on it 4 times a day. OK, more like maybe 2 times a day because 4 is almost impossible. Anyway, she is tolerating her feeds for now. She is getting two 8 ounce boluses daily. We are supposed to work up to three 8 ounce boluses daily which will provide 1125 calories daily. Anna is looking so much better already. It is amazing the power that nutrition has! We have been having some problems with Anna's pump (Zevex Enteralite Infinity) giving us a "no food" alarm even when the tubing is primed and the bag is full. There are not air bubbles and I have done all of the trouble shooting I can. I have cleaned the machine and all of its sensors but to no avail. It is also sounding like the motor is lagging. If I program a 250 ml bolus to go over an hour, after that hour only about 1/2 of the formula has infused. So it is taking 2 hours to do a 1 hour bolus. I called our DME company yesterday and they are sending us out a new pump today. I hope it works well. If not then we got a bad batch of bags. I have heard that can happen as well. We use Central Line Infusion out of Amarillo and they have been great so far! I hope all goes well with the scan, it is always such a joy to keep a kid NPO. It never fails that you cannot get them to eat until they aren't supposed to and then that is all they want to do. Ah, Murphy's law at work again...

Blessed Beyond Measure

The Monday night of my last post was a disaster. It took me about 2 hours to get Anna to sleep and then she woke up at 1am and stayed up until about 5. Of course, Kenneth was on duty. By the end of our non-slumber party I was in tears, so tired and frustrated with the lack of sleep that has been my life for almost 2 years now. The more I cried the more Anna laughed. Keep in mind that 1. the Gtube was supposed to help fix the sleeping problem and 2. She takes 50mg of trazodone and 4 mg of Valium before bed. All of this was enough to make me resolve to do whatever I had to do to fix this problem. I called the neurologist's office on Tuesday and received a phone call back not to long after from a new neuro in the group who was covering for our neuro. Yes, he personally called me (pick your jaw up off of the floor). He said he just had some questions about Anna's sleeping, or lack thereof, and wanted to talk to me about it. We talked for about 20 minutes and his solution was simple. It was this...stop rocking her to sleep, put her to sleep awake, and make her sleep in her own bed. I explained to him that she was getting feeds at night and that I was afraid to put her in her own bed because she gets tangled up in the tubing. He said that I needed to talk to GI then and restructure her feeds or move her bed into our room but that she absolutely had to have her own space. He said we needed to make the Gtube work for us He was kind but very matter of fact about what we needed to do. He did not offer more drugs. Kenneth and I talked about it and just restructured the feeds ourselves. It is terribly difficult to get answers from the GI clinic and when it comes down to it we have to find a solution that works for us. So we now give Anna 250 ml at about 2pm and then 250 ml at bedtime. Each bolus goes over an hour. She is tolerating it for the most part. The best part...ANNA IS SLEEPING ALL NIGHT IN HER OWN BED!!!!!! She usually wakes once about 4:15am but we go lay her back down and she goes right back to sleep. We are new people. I did not realize how bad things really were until now when we are sleeping. I mean, I know I griped a lot about it but I did not really realize all that 2 years of sleep deprivation had done to us. So Anna is getting her calories and we are all getting sleep. She is off of the Valium but still getting trazodone. We will begin weaning the trazodone soon as well. Things are falling into place and reaffirming our decision to get the gtube. Anna is getting her calories therefore Anna is sleeping and will hopefully be off meds soon. Those were our reasons for getting the tube. Praise God that it is working out!! Last night we decorated our Christmas tree and then woke up this morning to beautiful snow. I am excited about Christmas this year. Last year things were still too crazy and fresh and painful but we are in such a different place this year and for that I am so grateful!! I am blessed beyond measure!

A Good Substitute for Therapy

The Finished Product

She kept standing like this and saying cheese so I guess she wanted me to get a shot of this pose

The Master Decorator

The Beginning of the Cookies

I should *so* be going to bed but I have not been to my therapist in weeks due to scheduling conflicts so this is my next best therapy. After the night in the ER with Anna she pretty much got well quickly. It sucked that she was sick but I didn't really mind that the fever made her tired. I know, that is not a good mommy thing to say. The best news of all- she is tolerating her feedings. (That is a lie, the best news would be that she is sleeping all night so maybe it is the second best news) We have been going up nightly and she is now getting 100ml over an hour every 4 hours throughout the night. I somehow feel that by typing that I am sure to be puked on by morning but oh well. I did forget to turn the pump off the other morning though when I unhooked her and returned to my bedroom later to find a nice 60 ml river of tube feeds in the bed. We did laundry and the next night Anna pulled the feeding set out of her button during the night and so we repeated the river and the laundry. Our sheets are now likely cleaner than they have ever been. Her formula is 1.5 cal/ml so that is an extra 450 calories a day which is HUGE. That puts us at about 700-800 calories a day now. I talked to the dietitian who said she needs 1300 cal/day so we are getting there. We will continue going up on the feeds until she doesn't tolerate it. The dietitian said it is weird that she tolerates the boluses and not the continuous and that it is usually the other way around. I told her that Anna does everything backwards. The dietitian said that if she vomits again we could try Nestle Compleat (yes, that is how you spell it) formula. It is chicken and peas and cranberry juice ground up into tube feeding. How nasty is that I ask you? I know she doesn't have to taste it but still, there is just something wrong about that. I looked into it but it has a milk component too so it will not work for Anna. I think it is less about the formula and more about the reflux anyway. I am over being irritated at the GI clinic. I have discovered their main malfunction and have been assured that it will be fixed in February when ALL of Cook Children's records are electronic. Carly is out of school all week for Thanksgiving. I am trying to do some special things with her this week. Tonight she helped me cook dinner and then we made cookies and had movie night. She chose 101 Dalmatians but then was scared throughout most of it. She got special time with me though and that is really what mattered. I can't believe that about 2 months ago she wouldn't eat beef and now she is helping me cook it. She was so proud of her cookies and couldn't wait to call her daddy at work and tell him the cookies would be waiting for him when he comes home from the station in the morning. She just keeps saying to me in the sweetest voice, "Mommy, I love you." I wonder sometimes what I have done to deserve such love from her, she is so sweet. I had an experience today at lunch that I am sure will just be the first of many but it was so sad anyway. I took the kids to eat lunch at Arby's and let them play on the playground. There was this snooty mother there with her 4 children. I heard her tell her kids not to play with Anna after seeing Anna's Gbutton through her onesie. She then added that Anna might bite them. I was disgusted that an adult would do this and sad for her children that this is what their mother is teaching them. It hurt my feelings but then I got a chuckle because I know as Anna gets older and hears these things she is the kind of kid who will just go over and knock the crap out of them. She is tough. It isn't that I condone her knocking the crap out of someone but if I have to chose between people's ignorance or my daughter showing them who is boss, well, then, my money is on my daughter. On a totally separate note I heard an earth shaking sermon Sunday on forgiveness and am determined to work on it. I am usually a very forgiving person but there is one person who I just have an emotional choke hold on and I can't seem to let go. It has everything to do with Anna. I have to learn to forgive him. It isn't because he deserves it, it is because it is what I am commanded to do. I did not deserve the forgiveness I got from God but he sacrificed his Son anyway. This sermon came at a divine time. I say that not so much because I have never needed to forgive before because Lord knows I have needed to but because events this past week have really made me look deeper into this subject than I might have otherwise. On Friday I received word that we will be signing a contract with Mueller and Hillin Law Firm out of Austin to likely represent us in a malpractice suit. Then I heard the sermon Sunday and began really questioning if pursuing the case is in line with forgiveness. I have thought and prayed and read and where I am right now is here...I try to think of the love my heavenly father has for me like the love I have for my children. When they are wrong, I forgive them but even after that forgiveness they must pay the consequences for whatever they have done. So today I do not think that forgiveness excludes consequnces. I am having a really hard time putting all of this into words so I hope it makes sense. If you understand what I am saying what do you think?

Dear Santa

My sister bought Anna this onesie last year. It still fits and so does the messsage.

No Rest For The Weary

I thought about just pulling my hair out but if you have ever seen me you know how long that would take and I just don't have that much time. Anna has had a fever of 104 since Sunday. It goes down with Tylenol and Motrin but comes right back up. I took her to the pediatrician yesterday and he was great and said we would wait it out a couple of days and if it wasn't better Anna would need a work up. She has no other symptoms, just a fever. Her flu screen was negative but we again were just hoping for some virus. Yeah, I know, I'm crazy- hoping for a virus. He called and checked on us today and things were about the same so we decided to wait until tomorrow and see where we stood. As our luck would have it her fever went up to 105 this afternoon and she was breathing funny. I talked to the Dr's office and decided it was best to take her to the ER. I was there for 5 1/2 hours. Guess what we know now- she has a fever of unknown origin. Her white count is up so there is infection somewhere but her chest xray is clear and her urine is clear. Those would be the 2 most likely places for her to have an infection. She had blood cultures drawn but they take a few days to incubate and even if they were positive that infection would have to originate somewhere. I am afraid it may be her Gbutton. She got a shot of Rocephin (ouch!) and we are to follow up with the pediatrician tomorrow. Although the ER took forever everyone was great except for the triage nurse. This is at the hospital where I work so I will have no problem taking care of it. She was rude and treated me like an idiot. I not so politely reminded her that I work in ICU and am not easily rattled but that my kid is really sick and that there was really no need to treat me like an idiot. Her response was that "your daughter looks fine to me." I will be happy to provide her with a copy of Anna's labs and remind her that being presumptuous is not really a quality one should strive to have. It sure would suck after a long hard 12 hour ER shift to find one's tires flat don't ya think (OK, so I can dream right). And then there was the GI's office. They called to let me know that after looking at the results of Anna's upper GI the Dr would like to start her on Prevacid and Reglan. Uh, the problems with this are 1. Anna is already on Prevacid and has been forever and 2. I have told them a million times before that unless there is no other option I really do not want to use Reglan. Yeah, well, the Dr is doing procedures all day so he won't be able to get back with me until at least tomorrow. I know we are only 1 of 1 million patients but isn't that all the more reason a Dr should be looking at the chart before deciding what to do with a patient? I am not trying to be a pain, I just want somebody to pay attention to what they are doing. If they would get it right the first time I would quit calling back and we would all be a lot happier! Tomorrow I get to go eat Thanksgiving lunch at school with Carly. She is so excited. I am excited to see her and watch how she interacts with others at school. As for eating a school cafeteria holiday lunch, not so much...

Down and Out

OK, so apparently there are too many acronyms in my life. Today was not an EGD for Anna, it was an Upper GI. I am sleep deprived and can't keep it straight anymore. The results were sort of what I had expected but then also not what I expected. The upper GI consists of giving the kid barium (Anna's went through her button so that was easy) and watching it under flouroscopy which is kind of like a constant xray. When the radiologist first turned the flouro on she was asking when the last time Anna ate was. I told her it was around midnight. Apparently Anna still had food in her stomach from dinner last night. The barium cleared easily but it appears she is not digesting food appropriately. I expected that since the ralph sessions always included the previous night's cuisine. The next finding was odd. If you will recall Anna had a pH probe done not too long ago. It did not really show any reflux and it is the definitive test for reflux. She did have some esophagitis which meant she has a little reflux but it did not appear to be that severe. Anyway, when the tech pushed the barium in it shot all the way up her esophagus into her mouth and stayed there in the esophagus for the remainder of the test. So, the minor reflux turns out to be major reflux. Anna is already on Prevacid so that should actually stop the reflux but obviously is not working. I found this news upsetting because if we had known she had reflux we likely would have gone ahead and had the Nissen fundoplication done while having the g button placed because the 2 are usually done together. Since the pH probe did not show any reflux nobody thought she needed the Nissen. Now she will probably need the Nissen but will have to have yet another surgery. I feel horrible for Anna and it is stressing me out. This has not been a good day for me. I am frustrated and feeling hopeless but I know that all stems from my exhaustion. I am averaging 3-4 hours of sleep a night and working full time. I feel like I do not know how much longer I can go on like this but also know there is no choice. I had really put all of my faith in the G button that it was going to be the answer to the sleep problems. Now that things are not any better I just do not know where to go from here. It isn't that the button won't be the solution long term but we have to get all of the kinks worked out first and I just don't know how long that will take. She is tolerating 30 ml every 4 hours but that comes out to about 4.5 oz every night which is not enough to make a difference. Most days I feel like this CP is tolerable and doable but today I am reminded that how things are today is probably how they will always be. There will likely always be something medically going on with Anna and there will be few times when we can truly just sit back and relax. The truth is that there will always be Dr.s appointments and this and that. Today I hate this terrible palsy. Sometimes I can deal with it. Today- not so much. I had a breakdown earlier today and luckily Christy came and took the kids so Kenneth and I could get out for a bit and I could calm down and get myself back together. I hate when I breakdown. Again I thank God that he placed Christy in our lives. I think I hear a pause in Kenneth's snoring so I best try to go lay back down and go back to sleep. Wish me luck...

Her Abnormal Normal

First off I want to thank all of the veterans who are responsible for the fact that we are free. I also would like thank the families of those past and present serving in the military because they make a huge sacrifice as well. As my brother in law leaves in December to go to Iraq I see again that not only does the soldier sacrifice a lot, but so does his wife, his children, his mother, his father, his siblings... So again, thank you!!

Now back to the regularly scheduled broadcast... I called Dr. O's office on Monday and reported the continued vomiting. I received a call back from with a new plan. We are to feed Anna 30 ml over an hour and then stop it for 4 hours. That (for all of us non metric people) is 1.5 oz over an hour. We do this throughout the day. She has done well with it for 2 days now so I may be brave and try to do it through the night tonight also. The second part of the plan is that Anna will have yet another EGD this Friday. Luckily this time they will just go through her button so she will not have to be intubated again. I am happy about the no intubation part! Seriously, 4 intubations before the age of 2 is just not right. I do not really know what Dr. O will be looking for with the scope. When I called I was just really hoping for some Erythromycin or something to promote gastric motility. I do not want to use Reglan on Anna but will if that is what Dr. O wants to do. I have gone over and over in my head wondering if this is the right thing- to do another procedure. What I keep coming back to is this: Dr. O is the best in this part of the country. I have to trust him. I have to believe that he is doing the right thing. It would be foolish I suppose to just start some medicine and never really investigate the root cause of the problem (although the meds would be SO much easier!) If I do not trust a doctor then it is time to move on to another one. My gut tells me to stick it out and do what Dr. O says and so that is what we will do. I just hate my baby having to keep going through all of this stuff. I know that she doesn't know any different and to her this is all just "normal" but I know it isn't normal and that is so hard.

Ralph

So the first day home was pretty much gravy except that we were tired. I had updated Thursday that things were going well, and they were, until Thursday night/early Friday morning. We went to my nephew's football game and Anna was all over the place. She was up and down the bleachers. Apparently she didn't get the message that she had surgery 2 days prior. We got home and put the kids to bed and got Anna all hooked up to her feeding pump. Things were quiet (except for Kenneth's snoring) until about 4:30am when I was greeted with a showering of Anna puke. I'm talking a whole night's worth of tube feeds plus a bunch of other undigested food that had apparently been hanging out in her stomach for awhile. It was vile and it repeated 2 more times, each one right after I would finish cleaning her up from the previous time. Kenneth was up doing laundry like a madman trying to keep up with the Ralph rate. Although she never really had any fever to speak of we hoped it was a virus and not that she was not tolerating her feeds. She laid around a lot Friday so we just knew it was viral. Friday night we just ran Pedialyte through her tube for half the night and she did fine. We thought the "virus" was gone. Just to be on the safe side we restarted her feeds last night at 1/2 the prescribed rate. They ran at 15ml/hr until about 6am when it happened again...the puke monster reared its ugly head. This time it was a bit less and luckily we were sleeping in the recliner under a blanket so the clean up was much easier and thank goodness because Kenneth went back on duty today. So, it appears the virus was no virus at all. I think tonight I will skip feeds all together because I have to work tomorrow and will leave early and do not want Christy to have to deal with puke. I plan to call Dr. O's office first thing tomorrow and see what we need to do. She probably needs something to "jump start" her gut for a little while. I knew there would be bumps along the way and this is just one of them. I am exhausted beyond what words can even express but still feel we have done the right thing. I know this will resolve and she will do fine. This seems to be a pretty common thing in newly tube fed kids. I am giving boluses of Pedialyte to prevent dehydration and she is doing OK with that so I consider that good news. I know God's plan for us is perfect and that all of this has a purpose.

Microvasive Button

We got to come home yesterday shortly after lunch and all is going well so far. We gave Anna a bolus feed yesterday afternoon and then ran her on the pump throughout the night. She woke up once asking for a bottle and once with pain. She drank about 3 ounces when wanting the bottle and then we gave her Tylenol for pain and she did fine with those solutions. I expected her to be hungry because she had not had anything by mouth in almost 2 days. She had Cheetos for breakfast today (her choice) and ate some jello for lunch. I just gave her another bolus feed since she didn't take much lunch. She is already getting used to it and just laid on the couch and let me feed her. For the past month or two that we have been toying with the idea of the tube I had googled a million things about the tube and never really found the specifics of what I was looking for. I am going to try to provide some of that information here so that maybe the next person who ends up where we are will have a place to go and have some answers to their questions. Anna's Gbutton is called the Microvasive and it is manufactured by Boston Scientific. It is small and feels like it is made of silicone (not sure about this though). Here is a picture of it..

I had just given her a bolus before this picture and LOVE that her belly looks so full!! So anyway, to fed her you just open up the little flap and hook the feeding set to it.

The little blue piece just plugs into the hole in the button. We taped the tubing to her stomach last night just to prevent it from pulling. The button has come open without us knowing it a few times for whatever reason (I think the car seat has something to do with it) but the button has some type of one way way valve so things will not leak out unless we use the tube that is to vent the gas out. We haven't had to use that yet though. So even if it comes open it will not leak which is nice. The pump is tiny and comes with a little backpack that the pump and food bag fit in it and we just hang it up on the wall by the bed. The blackberry by the pump is just for size reference, it really is a much smaller pump than I expected.

Thank you again for your continued prayers. We have been blessed beyond measure!

Quick Update From Cook's

We got a call from Cook Children's yesterday that they would be placing Anna's Gbutton today. That is service- you agree to the tube on Friday and have it placed on Tuesday. So we came in early this morning. All is going well. I do have to say that Anna has been in a bit more pain than I expected but she is well controlled with her pain meds. About 6 hours after the tube was placed they began running Pedialyte through it. They will do that until about midnight when the will start with the Peptamen. The home health company is supposed to deliver our feeding pump and a case of Peptemen before lunch tomorrow and then hopefully we can go home. They will stop the continuous feeds in the morning and give her a bolus feed and make sure she tolerates that also. I have to brag on Cook's- this place is awesome and we have been treated so nicely from the housekeeping staff and cafeteria staff to the nurses and physicians. It is so nice to have a wonderful children's hospital to go to that isn't too far away. Carly is staying with my parents and she is doing well also. I was quite apprehensive about leaving her for a hospitalization since the last one I left her for lasted so long but she has done well. She came to visit Anna today but was a bit afraid of her due to Anna's IV and feeding tube. The IV will be out before we go home and I know Carly will grow accustomed to the button and all will be well. God has really taken care of us right down to the tiniest detail, as he always does. I have to say that watching the nutrition flow into Anna's body has also breathed new life into me. I have not felt this relieved in a very long time. I know now that no matter what she chooses to eat, we will nourish her. I know there will be bumps along the road but I really wish we would have done this sooner! Thank you so much for your continued prayers for us! I have not really had much sleep (not that that is new) so I hope this post makes sense but if not, oh well...

Uncle

Cartoons & Breakfast

Chillin'

We went for Anna's GI appointment with Dr. O today. I was thrilled to find out we were indeed there on the right day this time. Anna had gained a pound since the last visit which was 2 months ago. I have never been so proud of a pound in all my life. Dr. O and I discussed Anna's progress a bit and then I just finally told him that Kenneth and I are not opposed to the Gtube and are actually ready for it if he feels it is appropriate at this time. We have fought long and hard but we have lost this battle. We have tried everything we know how to do but things are just not getting any better. His response was, "then let's get it scheduled." It seems so strange but I have nothing but peace about this decision. We have spent almost 2 years now obsessing about every calorie and every bite and every ounce that we could get Anna to take and we can finally take a deep breath and let that go. If she chooses to eat, great, and if not, that is fine too. I can go to bed at night not fearing what will happen if she gets sick or have to listen to her little tummy growling and yet still not be able to get her to eat. It is kind of like that by surrendering we are actually gaining some control. Dr. O and I discussed the new feeding plan and decided it will be to let Anna eat whatever she wants during the day and put her on a pump at night. We will start slow and increase her feeds until she is tolerating the right amount. She will be using a formula called Peptimen Jr. It is hypoallergenic since she still does not really tolerate milk products. They used to put a Gtube in first and then weeks later go back and place the Gbutton but Anna will get the button right from the start so there will be no need for another surgery in the near future. We will have to just stay overnight at Cook's for one night for pain control and to make sure all is working well. It is hard to put into words how I feel about all of this. It isn't that any of this is what I wanted but it is the best thing for us, right now, given the circumstances. It is our prayer that this Gbutton will allow us to get Anna off of all of the meds she is on and allow her to sleep naturally because she will no longer be starving. It is so hard every night to load her up with adult doses of adult medications and know that they are really not so good for her. So what some might feel is devastating we are smiling about because we know it has to get better from here...

Such A Monday

Anna woke me up for the third time, it was finally 6:30am though so I decided to go ahead and get up. I cooked some biscuits, got Carly up and ready for school, dropped her off at school and headed home to shower. Anna and I got ready and loaded up for the 45 minute trip to Denton for her GI appointment. I had been in deep thought about this appointment for awhile and was so glad it was finally here. We got to Denton at about 10:15 and her appointment was at 10:30. I was doing SO good! We went to the desk to check in and I told the receptionist we were a few minutes early. Turns out we were a few days early, the appointment isn't until Friday. UGH. We drove back home. At least Anna took a little nap in the car. I had a nice lunch with my mom. Anna refused to eat anything. I came home and chilled for a bit and went to pick Carly up from school. Carly is a compliant kid who really aims to please. She is very afraid of being in trouble. She is a nervous Nellie. She attended the same school for 2 1/2 years and never once got in trouble. I know that is impossible to believe but it is true. She was just that good. Well, all good things must come to an end. And they did. Today. I am not blaming it on the new school, that just happened to be the scene of the crime. I walked to Carly's classroom and her teacher met me at the door to inform me that Carly had a bad day. I assumed this meant she had been whiny or something. I was so wrong. Instead, she decided during nap time that she didn't want to nap so she got under a desk and took a marker and colored the carpet. She had an accomplice and they were both sent promptly to the Principal's office. They got to spend the afternoon's playtime scrubbing and cleaning the carpet. Nice!! She got quite a lecture from Kenneth and I, she had to write an apology to her teacher, and she is not allowed to use any art supplies (her favorite things) for a week. She is devastated but I am pretty sure she gets the point.

"Dear Ms. Blankenship, I am sorry for coloring on the carpet. I will not do it again. Carly"

The Amazing Brad and His Royal Subject

I cannot express how incredibly wonderful our speech therapist is! Brad has worked so hard with Anna and she really has connected with him and seems to want to please him. He is SO patient. He has to change activities with her about every 2 minutes. She keeps him on his toes. Not only is Anna learning more words, her words are becoming more clear. She has perfected Mama, Daddy, Carly, up, kitty, hungry, more, thank you, yes, no, cheese (she loves the camera) and drink. This may not seem like much to some people but to us it means the world! We were really worried for sometime that Anna might not talk. We are really starting to see some progress now. She is also making more noises and attempts at different sounds. We still rely on signing too but hope that some day she will be 100% verbal. Luckily we will have Brad until Anna turns 3 and ages out of Early Intervention. I will try to snap a picture of him during speech this week so that you can visualize the amazing Brad. Until then, here is a video of perfection... (Again, you will hear it better if you pause the music feed)

P.S. The Valium is not really helping Anna sleep. I am beginning to think about a rubber room for Anna and Kenneth and I will take the Valium. That makes it a win win situation, right?

Dexterity?

For all of the areas Anna is behind there are some things she is doing that seem far ahead to me. For example, I went to bed last night and turned my alarm on never paying attention to what the clock said. I usually look at the time on the channel guide on the tv and really see no need to compare it to the alarm clock time. So I went to sleep around and slept until about 2:30 when Anna got up. She is not sleeping again! I was up with her until about 4:45 and finally she and I both fell back asleep. The alarm went off at 5 and I got up to get ready for work. I really had to leave the house on time because I had to drop the kids off at the fire station since Christy is out of town. Every time she goes out of town I am reminded more and more of how blessed we are to have her in our lives. She comes over on the mornings I work and Kenneth is still on duty so I do not have to get the kids up so early. She is at our house at about 5:45am- yes, she is a saint. Anyway, so I got up at 5 and took a shower and as I got out of the shower Anna peaked at me through the bathroom door- she was up again. She "helped" me get ready for work. I was all ready and it was only 5:45 according to the alarm clock. I still had plenty of time...until I looked down at my watch and realized it was really 6:10. Anna had at some point the day before reset the time on the alarm clock. Needless to say I was late for work. But hey, it takes dexterity to change the time so I'll call this one "therapy." It was a good laugh! I called the neurologist and discussed the not sleeping. She is getting up around 2 am each night and staying up from then on. It is killing us! He said to continue to trazodone and we have added valium as well. I started her at half of the dose he prescribed. I hate giving her all of these drugs but don't know what else to do. She needs sleep and so do Kenneth and I. So she got her first dose of valium tonight, wish us luck!! She is talking more and more and adding words to her signs. Here is a tiny little clip of her saying "more." (You can hear it better if you will pause the music feed first) She was motivated by gummy lifesavers. Who wouldn't be?

Is It Me?

What a great weekend! Everyone is well and we were able to visit Arbuckle Wilderness (a drive thru safari type place) on Friday and then took Carly out for her special day yesterday. We took her to eat at a Japanese Hibachi restaurant and then to see Toy Story 3 in 3D. We try every now and then to take her out without Anna so she can have mommy and daddy to herself. Her needs get put second a lot due to all of Anna's problems so I try really hard to be sure Carly is getting what she needs from us. I know that she knows she is loved but I want her to feel like she can always come to us and that we are there for her no matter what is going on with Anna. It is pretty easy to tell when she needs special time. She quits minding and gets really whiny. Then we have a special day and she goes back to minding and having less whining. She kind of made me sad on Saturday. I had to work and she was telling me all about her day with Kenneth and Anna. She told me how they played with some other kids at the fire station and how one of them was "the same age as Anna but he could talk a whole lot more than her." I sometimes forget how noticeable her lack of speech is until I am snapped back into reality. Then I went to see my grandparents today and my grandmother was talking about how my cousin's baby who is 9 months younger than Anna is saying things like "Uh oh paskettios." Anna can say uh-oh but is no where near paskettios (spagettios). I know my grandmother is proud of all of her great grand kids but it is sometimes hard to hear where mine falls behind. Anna's speech is improving, don't get me wrong, but it still is no where near her age appropriate level. That is just another one of those parts of acceptance that slaps me in the face sometimes. Then with the whole eating thing. I am feeling a bit like a failure today. Last night I tried really hard and sat and made Anna sit and I fed her all of her dinner. It took what seemed like forever! I think I spent 45 minutes to an hour to feed her 1/2 a bowl of fried rice and a few bites of chicken. By the end I do not know who was more worn out, me or her. So she did eat, finally, but it was such a struggle. So now I am wondering if she doesn't eat because I don't try hard enough. I just don't know if I can spend 45 minutes to an hour feeding her every time she needs to eat which is like 6 times a day not including her milk. I could do it but then I would not have time to do anything else. Then I feel sad that "everything else" is coming before her nutrition. I do make the effort to feed her but usually she cries and runs away and I just give up. I try to let her feed herself and the same thing happens. I do not want to force feed her and I do not want her to hate food and eating because it will only make the problem worse. She has gained a little weight since her last check but she grew 3 inches too. She is actually worse off on the weight for length chart now than she was before. I am so sick of stressing about my child's eating. And now I am stressing about this, is it her or is it me?

Don't Believe The Hype

I have never had anything against pigs. In fact, I rather enjoy bacon and sausage and luckily, for the time being, my cholesterol can handle it. But this flu of theirs, I would have preferred that they just keep it. I wouldn't really mind selfishness here. But they did not keep it to themselves and it has creeped its way into this house. Although the media has hyped it up to be something to really be feared, it is surprisingly mild- so I am told. Luckily I am not the victim. I realize it has taken lives and made some really sick, but so does the regular flu which kills a far greater number of people every year. Anyway, Kenneth is a Type 1 diabetic. He wears an insulin pump and is well controlled with it. (I highly recommend the pump for anyone who is active and really wants good control.) So for some reason, if I think back to biology it probably has to do with the Krebs Cycle, Kenneth seems to catch any and every bug that comes through and this whole swine flu is no different. Since he is diabetic he got Tamiflu and is already feeling a bit better. He says this is nowhere near as bad as when he had the "regular" flu. He is just nauseated, febrile, and has pretty much slept for 24 hours straight now (yes, he is still breathing, I checked). The bigger problem is Anna. She is under 2 and also has a neuromuscular condition so she is quite susceptible and although this flu seems mild, most of the kids who have died from it have CP. So off we went today to our new pediatrician, Dr. David Goff, (who by the way is freaking awesome and I sooo wish I would have made the switch sooner) and he said Anna is the kind of kid who presents the biggest problem. She fits into the category of those who need prophylaxis when there is a confirmed exposure, but (there is always a but) there are not any studies out there on repeated use of Tamiflu (i.e. is it safe more than once, does it work more than once...). So, if she gets it now she will be protected for 7 days. After that 7 days she would not be able to take it again safely so if she got the flu then we would be out of luck. The infectious disease doctors at Cook's say nobody is really sure what to do about this group of kids. So together we came up with a plan. I am to call at the hint of a symptom and she will be started on Tamiflu. Until then we are just going to use common sense and pray, hard! He also talked about the G tube and he feels she needs it. He is going to speak with Dr. O about it. We follow up with Dr. O at the end of this month and we'll see where he wants to go from here. He also said the feeding clinic has good results but that the road to those results is treacherous and one that most parents usually end up hating. He said it is not nice and that it does usually require inpatient treatment. Again, no thanks...

The Teacher

A quote from The Water Giver by Joan Ryan

"For all we have been through , there is so little I know for certain except for maybe this: Motherhood is about raising - and celebrating - the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."

What I Really Meant Was...

I really try my hardest to be a nice person. I try to be sympathetic and empathetic and understanding of what people are going through. I try to be pleasant even when I don't really feel like it. Today at work was more trying than most days. A man came into the ER in the middle of the night having a huge heart attack (MI). He was taken to the cath lab, stented, and placed on a balloon pump. He was placed in ICU where I have had the pleasure of his company in a 12X12 cell (or patient room) with him all.day.long. When I say all day long I really mean it, I mean 12 solid hours. I have tried to be nice, I really have. I have said nicely, at least 100 times, that he must keep his leg straight to avoid puncturing his femoral artery and bleeding to death. I have said nicely that he must keep his oxygen on because his heart really needs the extra oxygen. I have said nicely that unless his chest pain comes back he will not have surgery until tomorrow because his heart needs to rest. I have said nicely that I understand how much it sucks to be flat on your back but I have given you all of the morphine, darvocet, xanax, and valium you can have. I have said nicely that we are trying to save his life and that it isn't our goal to make him miserable. But he is an ass. A big one. So what I really meant when I said all of those things so nicely was...Hey moron, nobody made you smoke 2 packs a day. Nobody made you not go to the doctor for 20 years. You are 70 years old with a strong family history of cardiac disease, maybe you should have had yourself checked out. Keep your freaking leg straight, I do not want to clean a whole body's worth of blood up off of the floor and then explain to your wife (who is downstairs smoking) what happened to you. Quit asking me if something is tangled around your foot. It is a restraint...because you won't keep your leg straight. And your family...I think I saw them on www.peopleofwalmart.com. They have caused me to rethink my decision to go to nursing school and work in the ICU because they clearly have much more knowledge than I do. That is why they asked me 800 times if you could sit up in bed after I told them 900 times why you couldn't. Dear sir, nobody asked you to come here for treatment. If you do not like our solutions to the problems you have created then please, go home, but quit taking your anger out on me.

I am not always this way, I promise. I am just really tired of people causing themselves harm and then being rude to me for trying to fix them. If you don't want treatment, by all means, stay home. We have plenty of people here who want to get better!!

Can We Please Keep Her

I suffered two near miss heart attacks by 8:15 this morning but luckily I survived them both. The first came when I got Carly to school and then she reminded me it was picture day. They make you order the pictures the day they are taking them (so you are guaranteed to buy them even if they suck) and I didn't have the order form or money with me and I had mistakenly let Carly pick her own clothes out. So I threw the kids back in the car and drove like a bat out of hell back to the house and changed Carly's clothes and slapped a bow in her hair and off we went back to school. We made it just in time for the last bell to ring. Heart attack #1 over. I know in the grand scheme of things school pictures are no big deal, but it is Kindergarten and I did not want to screw it up, believe me, she would never let me forget it. So I got back in the car and was headed home when I noticed Kenneth had called quite a few times in a span of about a minute. I called him back and he informed me that I need to go log on to our checking account on the computer because there was no money in it. WHAT??!!?? We both got paid last week and will not get paid again for 2 weeks and we are already our of money??!!?? Luckily I logged on to find the money still there. Kenneth apparently is not so great with the ATM in the dark on his way to work. Thank God, crisis #2 averted. Monday are kind of hellish around here even without the morning drama. Carly gets home from school at 3:30. She has just enough time to change into her ballet clothes and we fly to ballet which is from 4:15-5:15 (keep in mind we live about 20 minutes from the dance studio). Another quick change and we are off to soccer from 5:30-6:30. I did not plan for things to be this hectic but they are and we are getting used to it. Carly really enjoys both activities so we will keep it up as long as we can. The kids eat dinner in the car on the way home (something healthy like uh, pizza, or Wendy's or McDonald's) and then as soon as we get home it is shower, homework, snack, books, then bed. After the shower tonight Anna proceeded to pick up the baby gate and throw it at the cat and hit her with it. She may be tiny but do not underestimate, that kid has got an arm! I spanked Anna and she of course just looked at me like "Do it again, I dare you..." and then Carly started crying. I asked why she was crying and she said,"Are we going to get rid of Anna?" I tried to stop laughing long enough to ask why and she said, "Mom, I know she is being mean but I love her. Can we please keep her?" I told her that I guessed since she had asked nicely that we could indeed keep Anna. Aside from her mean streak Anna is doing a little better. Her pH probe showed nothing but her biopsies showed reflux esophagitis. Dr. O restarted her Prevacid. She is starting to eat a little more and has put on a bit of weight. She has actually slept better the past few nights also. I hope things continue to get better. We will go back for a GI check up at the end of October and see where we stand. I am praying for at least 23 lbs...

Well Written

The best post I've read in awhile...

http://babyonbored.blogspot.com/2009/05/acceptance.html

About That Whole Feeding Clinic Thing

I am trying desperately to not be a non complaint parent or the reason for any of my daughter's problems or the reason she doesn't get better but here is where I draw the line. I got a call tonight from one of the therapists at the feeding clinic at Our Children's House at Baylor where Dr. O had referred us. The therapist was asking me questions about Anna's eating and weight and failure to thrive and so on. I really did my best to downplay things because Kenneth nor I either one are any too excited about it. So the girl tells me they are booked until December but that she feels Anna cannot wait that long and that she wants to see her within the next couple of weeks for an evaluation. She says she will mail me the paperwork today and when I get it to get it filled out and faxed back ASAP and that as soon as they have a cancellation they will get her in. I am ok with that. Then she asks how far it is. I said we are 45 minutes from Denton and then however much further it is to Grapevine and she says, "Oh, we aren't in Grapevine, we are in Dallas." Yeah, downtown Dallas. Then she informs me that she feels Anna will need intensive therapy which consists of a 4 week inpatient program. Uh, nope, here is where we draw the line. I will not tear this family apart for a month for any therapy. It has taken us almost 2 years to rebuild what was broken with Carly from the previous hospitalization and I will not do it again, not when I have a choice. I fail to see how taking a kid out of her normal environment will help her learn to eat. Then there is the cost- 10% of a 4 week inpatient stay is too much. If these are our choices I'll take the G tube. Call me non complaint but this is crazy...

All Is Well

Everything went well today. We had to be at Cook's at 8 am. We left he house at 6 am and got stuck in traffic and luckily made it there right at 8. As usual, the staff was fabulous and got us right back to endoscopy. They prepped her with a nasal inhalation of versed and fentanyl and it took her awhile but she got drowsy and off she went. She was gone for about 45 minutes. They used general anesthesia and said she did well. We went back to see her in recovery and for the first time EVER, she didn't want to wake up. She would cry a little and then go right back to sleep. They said if we were comfortable we could go ahead and leave and so we did. If you ever feel you need attention (and we don't) just take a wire to your kids nose and go into Chick-Fil-A. She was the topic of all conversation. Anyway, Dr O said her EGD looked fine. He said the visual picture is worth about 50-60% of the equation and the biopsies and probe are the other part. So the probe is in and Anna is actually tolerating it rather well. We had it around her neck but it looked highly uncomfortable so we put it in a back pack and strapped it to her. It has buttons you push if she is siting up or lying down, eating or not, and if she is showing any symptoms of a problem. She can only eat and drink for 30 minutes every 4 hrs. During the other 3 1/2 hrs she cannot have anything by mouth. They had elbow immobilizers on her but we took them off. We may need them tonight as people tend to pull out tubes during sleep unintentionally. We will pull the probe out in the morning and return it (or be charged another $10,000). We should have all of the results by Tuesday or Wednesday of next week. Thank you so much for your prayers and well wishes! As always, you are awesome. The Periactin was working great until yesterday when Anna totally wigged out. If you don't believe me, ask my friend Joanne who witnessed the beginning of the meltdown. It started with her biting me, then beating her head into the wall and laughing hysterically about it, then hitting me, then hitting the speech therapist, then hitting her sister in the head with the computer mouse, then her biting herself, and well, you get the picture. It started when I gave the medicine and ended when the dose wore off so I am certain that was it. Not that she hasn't been a brat before- but not like that, it was awful. Anyway, if she does not have reflux we will try to continue the Periactin but give it every other day and see if she tolerates that. Then we will start the feeding clinic/therapy. I hope they can help but am unsure if we can absorb the cost and the miles. We shall see...

Steps 1-4 But Not In Any Particular Order

Anna's GI appointment was today and I guess it went OK. I don't really know what I was expecting to happen and I left in tears and angry at the doctor for not being able to fix things right then. That was an unreasonable expectation, I know, but I just want this to be over. My therapist tells me that there is usually some feeling behind anger, that it does not usually occur by itself. My hidden (or so I chose to think it is hidden) emotion is exhaustion. We had those few brief weeks that Anna slept but she is back to getting up every 2-3 hours again and I am growing weary. Enough about me- back to the appointment. By their scale she was down about what I thought she was. Dr O. (Ogunmola- but I refuse to type that over and over) said that there is a 4 step process to "fix" this problem. I think my frustration stems from the fact that the process can be long and my patience is wearing thin. Step 1 is to get the EGD and pH probe done. He moved it up to the 10th so we will be doing that next week. After the EGD they will put the pH probe down her nose into her stomach and leave it for 24 hours. It will come out of her nose and run behind her ear to some little box that will make the recordings of the acidity. It should be great fun to keep her from pulling it out. Then we go back the next morning to have it removed. If there is indeed reflux which I am sure there is then she will be restarted on Prevacid. Step 2 is to start an appetite stimulant. He says he usually waits until after the EGD to start it but went ahead and started it today and is taking the "plan" out of order given Anna's worsening failure to thrive. She will be getting Periactin 2X a day to try to get her to eat. He said it might make her sleepy. I got a good chuckle and said that since in takes 50mg of Trazadone to get her to sleep and she still wakes every 2-3 hours that I doubt the side effect will affect Anna. Step 3 is to start Anna at a feeding clinic/feeding therapy program at Our Children's House of Baylor in Grapevine. The crappy part about it is that it takes 2-3 months to get in and it is about 90 miles one way from our house. I hope the insurance will pay their part but it will still leave us with a lot out of pocket that we don't really have to spend. Step 4 is to insert a Gtube if things do not improve. We discussed going ahead and placing an NG tube and starting feeds that way but he is afraid she will shut down completely and quit taking anything by mouth. We also are switching her milk, AGAIN. We are supposed to use Bright Beginnings Soy but I cannot find it here so I think we are going to stick with Soy Silk and add regular soy formula until we get the calorie content to 30 calories/ounce. That was the point of the Bright Beginnings was to up the calories/ounce so I'll just improvise, I am getting good at that. Thank you so much to all of you who called to check on us today. You never cease to amaze me. On a happy note, Carly finished her first week of Kindergarten his week and she handled it amazingly well. She is not a fan of getting up early but otherwise did great. She is glad I pack her lunch because, "Mom, in the cafeteria they make you eat off of A TRAY!!" Perhaps she is a bit spoiled, eh? She has also started back to ballet and is playing soccer also. She is doing great at both and I am so proud of her. She really sacrifices a lot for Anna and rarely complains about it. God knew what he was doing when he made the two of them sisters. Here she is playing goalie...

2 LBS Down

A visual of the problem- the only red dot above the lines is her height- nothing else even hits the bottom line which is 5th percentile. The top charts are length for age then weight for age. The bottom charts are head circumference for age then weight for length.

It doesn't end, it really really doesn't. The Lord promises he will not give me more than I can handle and I am going to trust him on this one. Anna is losing weight again. We have tried everything we know how to do and it just isn't getting any better. She has lost 2 lbs in a month. 2 lbs on me is nothing, 2 lbs on her is huge!! I knew she had not been eating much and was taking less and less milk. The other day I was changing her clothes and really realized how much more her ribs and spine were sticking out. My heart sank. We did not own any scales but I knew if it was enough for me to notice then it was too much. I called and spoke with the GI's office. Once again, they were wonderful and took my concerns as seriously as I did. We have an appointment on Thursday and then Anna is scheduled for and EGD and manometry on September 15th. Basically, she is having a scope placed in her mouth down into her esophagus and stomach to check for problems and reflux, etc. This might also tell us if her swallowing is a problem due to her high muscle tone. I am praying for answers. The answer is likely going to be that Anna will need a feeding tube (G tube). Kenneth and I have discussed it and feel that at this point it might be the best option. Anna would still be able to eat whatever she wants but then during the night we could hook her up to a feeding pump and feed her continuously through the night. That way she would get all of her calories whether she ate that day or not. It is not an easy decision but hopefully if that is the route we end up going it will only be temporary until her muscles either relax a bit or she learns to better control them. I did go and buy some scales and was is disbelief at how much she had lost. She will be going to Dr Ogunmola's office now every other week for weight checks also. It isn't just about being skinny. She is truly malnourished and her learning and ability to try and "catch up" is altered by this also. I think I am ok with it as much as I can be. I know I have to do what is best for her to give her the best chance to grow and catch up. I have spoken with many other parents who reluctantly went with the tube as well and all have had fantastic results and say they would do it over again in a heartbeat. They all say their child/grandchild has really benefited and that the complications have been minimal. Please pray for us this week that we will be accepting of whatever it is we need to do and pray for Dr Ogunmola that he will know the right thing to recommend.

The Emotional Side Of It

So back when I posted the "A day in the life" post I said I would do a second post about the emotional aspects of all that has happened and I am finally getting around to it. There are so many things I want to say that they will probably get all jumbled but oh well, here goes. Grief is a lonely thing. I am surrounded by so many wonderful people in my life who truly care about me and my family and how we are doing but I have never felt so alone in all of my life. I have never felt so distant from people before yet had so many people who want to get close to me. There are people in a lot of similar situations who are going through similar things but none of them are in my exact situation and so I feel so alone. That is true with any situation and any grief and I am realizing that more and more. I try to express what I feel but the words just don't do it justice. I grieve so many things. I have this deep ache in my heart that longs for my child to be "normal." I want to look at her and just see Anna and not see Anna with CP or Anna with a brain injury. And that is what it is, it is a brain injury. You can call it all sorts of things but what it boils down to is a brain injury. It is classified as "mild" but it might as well be hellacious because in my heart there is no distinction. Don't get me wrong, I am thankful it is not worse, but if you think for one minute that just because my child is walking and not in a wheelchair that my pain is somehow less you are wrong. That is the problem with being "mild." You don't fit with the normal people but you don't fit with the really abnormal either. There is this grey area and that is where we are. I am trying so hard to conduct myself in a manner that I can look back on years from now and have no regrets about the way I have acted, but I am angry and I struggle daily with how to handle things in a manner pleasing to God. I feel there is someone who is mostly responsible for the way things are and after confronting him I was not told that he was sorry. I don't even mean sorry as in accepting ANY sort of responsibility, I just mean sorry that things turned out the way they did and sorry that your child is injured and sorry that life has changed for you so much. Instead I was told, "Shit happens." You know, to me, that might be something you say if you spill your beer but not in response to the loss of something like the normalcy of a child's life and a mother's dreams. It added insult to injury and it is not something I will easily forget. It makes we want to scream and yell but I know that will get me nowhere. So I have to find some way to be OK even though I am almost certain I will never get an apology. And even if I did it might not really make that much difference, Anna's situation would not change. Who knows, it might make a difference but one thing I am pretty confident of is that I will never know. Then there is the jealousy- of so many things. I am jealous of others with "normal" kids who are going and doing and taking the simple things for granted never having to stop and consider that for us those things are such a struggle. It is a battle for Anna to walk and to talk and to eat and to sleep. We have to fight hard just for the little things with her and it is exhausting. We fight for the things that most people just take for granted. We fight to get her to the right doctors, we fight to get those appointments paid for, we fight to get her the therapy she needs and the battle shows no signs of slowing. I am jealous of Kenneth because he is able to just kind of take it in stride and I can't. I want to desperately but I just can't. I hope the reason is because while I was busy the first year getting her to doctors and making sure she had what she needed he was already starting the grieving process which I did not really allow myself to start until now. So he is ahead and I hope that is the answer to why we are in such different places. It is good to be in different places though because if we were both where I am now we would fall apart. Thank God I started counseling because it is really helping me sort some of this stuff out. I am not sure if the grief will lessen or if I will just become stronger and more able to deal with it but either way I will make it through but in the mean time please be patient with me. I am trying...

What Crack Looks Like

Well, this is what crack looks like at our house anyway. Meet Gah-Goo. He is 4 1/2 years old. He used to be pink. He used to be soft. He used to recite a prayer. He used to smell nice. Now he is a nasty shade of grayish pink. He is well worn. He has been re stuffed and re sewn more times than I can count. He smells like a trash can (even after Tide and Downy). He no longer prays. He has been on trips far and wide and even survived a fall from, if I recall correctly, about 15 stories at our Destin condo. He has been lost and found more times than I care to remember. Carly will hold him to her nose while sucking her thumb to get what she calls "a snuf." I have been trying in vain to break the addiction but am getting nowhere. I just don't have the heart to take him away for good, I guess I am an enabler of sorts. She starts kindergarten in 2 weeks and Gah-Goo will not be allowed to accompany her there. I am looking for a quick 2 week rehab program for this sort of crack addict or this enabling mother and if you know of one please speak up, and quick. We have deadlines here people...

And Now For The Blessings

I have really been in a funk the past few days and have found it almost impossible even to smile and have really struggled to fight back the tears. I got some much needed rest and woke up today with a new attitude and somehow I found my smile and laugh again and for that I am so grateful. I do not like to be sad. Kenneth and I got to go out the other night without the kids and went to a wedding for a firefighter friend of his. It was good to be out and around adults. His mom kept the kids for the night. Then last night, somehow, both kids slept all night in their own beds. I feel like I have won the lottery! Anyway, enough about that. I want to write about how CP has blessed us because it seems there is always a downside to talk about but I want everyone to know there is an upside as well. First, there is my marriage to Kenneth. After Anna's diagnosis things really went downhill for our marriage. It seemed at one time that separation was inevitable and that making it work was almost impossible. Neither of us were raised in homes with divorced parents and didn't want to raise our kids that way but we could not see the light and figure out how to make it work. Looking back I really think it was more me, but we each had our share of the blame. We fought to stay together though and make it work and God blessed that and together with him our marriage is stronger than ever before. The other night at the wedding there was this 21 year old throwing herself at Kenneth and while I pitied the 21 year old I was able to laugh it off because I know there is no one else Kenneth would rather be with than me and that I feel the same towards him. We have been through too much together and starting over is not an option for either of us. We have had to learn to rely on each other in ways I never imagined. I think any life changing experience (death, serious illness, etc.) can teach you things you would never learn any other way and a special needs kid can do that too. Friends- I have learned who the true ones are and who the ones are that can't be bothered with my life because it is too complex, or too sad, or too different from theirs or whatever. I have had people who I felt were friends really show me their true colors and not necessarily in a good way. I have had people who I never thought cared really step up and I have met people I would not have ever met had I not been reaching out to other families in the same position we are in. I have had to learn patience, but believe me, this one is still a work in progress. The patience factor comes at me from so many angles. I have to be patient with Anna- patience to do things at a slower pace and patience to realize I can't fix everything right now and that sometimes the best thing to do is nothing at all. I have to be patient with therapy and realize she can't be in all therapy all the time and that the results of therapy are not immediate. I have had to learn patience with Carly and the way she deals with how our lives have changed. Mostly, patience with the Lord to be still and calm and to wait on Him because I know he will make all things right in His time. I grew up with a fairly affluent lifestyle and have had to learn to let that go. There were times we could barely afford to feed Anna when we were spending over $500 a month on just formula. I had been off work for 6 months and had over $100,000 in medical bills and we did not know how much of it the insurance would cover. Things were really tight. The bank sent us a foreclosure notice on our house 2 different times but we are still in our house and caught up on our payments. We were sued by a credit card company for failure to make payments. It is a hard thing to accept that you cannot fulfill your obligations but again the Lord provided and we were not made to repay the money we could not afford. It isn't that we didn't owe it, we did. We were just in a really bad spot and were having to chose between feeding our child and getting her to the specialists she needed to see and making credit card and house payments. I learned the importance of tithing and that God will provide, and he always does. So my faith has grown by leaps and bounds. I have always had a relationship with God but had never really been in a spot where I felt I *had* to depend on Him and Him alone. When all of this stuff with the pregnancy and Anna's diagnosis it was then that I felt I *had* to lean on Him for the strength. There was no human strong enough to guide me through the rough waters, He was the only one. And last but not least, I have really learned to be thankful, for everything I have because it could be gone in an instant...