Sunday, August 30, 2009

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.

Tuesday, August 25, 2009

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...

Wednesday, August 19, 2009

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...

Sunday, August 16, 2009

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...

Monday, August 10, 2009


Jack is in the corner
The dish is with the spoon
The sheep is in the meadow
The cow is on the moon
But I am here with you and I believe
There's no place I'd rather be
And a promise not to leave you
Is a promise I can keep

You're my muse
You're my rhyme
You're the fire warming this heart of mine
When you hear me say I love you
Anna, do you know how much I do?

So I watch you from a distance
Getting lost within your world
You pretend to be a princess
As you flutter and you twirl
Fragile as the flower in your hair
Dancing in your castle, unaware
That a single day without you
Would be more than I could bear

Little Anna, little star
That is what you really are
Cross my heart and hope to die
You're the apple of my eye.

Micheal W. Smith/Wayne Kirkpatrick

Sunday, August 9, 2009

A Day In the Life

Many people have asked me lately what our day to day life is like so I thought maybe I should have a post detailing this. This will probably ahve to be a 2 part series. One part on the day to day and one part on the emotional dealings. Every morning Anna wakes up anywhere between 5-8 am. It is usually closer to 5 but sometimes we can get her to go back to sleep. We count those mornings as sheer joy! We get up and then Anna gets a bottle of soy milk- she is a big fan of the Very Vanilla Soy Silk. She cannot have cow's milk or other milk products or she gets a scald looking rash on her butt and eczema all over her legs and an ear infection to go with it. She is still taking a bottle for many reasons but the most of which is that she is still so skinny that I need to be sure she gets a certain amount of calories a day. She will not drink milk from a sippy but if I use the bottles she will drink it. Right now the calories are way more important than weaning from the bottle so the bottle it is. She will drink about 4 ounces. She occasionally will drink 6 but has for the most of her life only taken 4. If you think about how tired your mouth gets after chewing for a long time then you kind of know how it is for her to eat or drink anything. It takes a lot of muscle control and she is easily tired from it. Then she is off. She is the busiest kid I have ever met. She is not the typical kid in that way. Carly was busy too but Anna is like a supercharged Energizer bunny, all of the time. We work some on signing and speech as the day goes on. We spend some time with her fussing and me going down the list trying to figure out what she wants. It is like when you have a new baby and they cry and you start with are they hungry, are they wet, are they cold... You keep going until you figure out what makes them stop crying. Anna is smart and knows what she wants but has difficulty communicating that so it is like playing the guessing game but she knows what she wants, she just can't tell me. She has about 8 words and 5 signs and the rest is just a guessing game. She can say Daddy, Carly, kitty, please, thank you, drink, yes, and no. She rarely is able to say Mama although I have heard it once or twice. She can sign milk, more, hungry, drink, and sleepy. Kenneth is determined to teach her the sign for "kiss my butt" but I am doing my best to discourage that!! Then it's lunch. She pretty much plays most of the afternoon. As she starts to get tired in the afternoon she starts to fall more. You notice her left leg turning in more and her left arm/hand becoming much stiffer. Her hands will go back to the fisted position they used to always be in. She will sometimes take a little nap but most days it is impossible to get her to take one. On Monday afternoons she has speech therapy for an hour. By the end of that hour she is completely exhausted. She has dinner at about 7 then a shower. Then the fun begins. We crush up 25 mg of Trazadone and 6-9mg of melatonin and mix it in applesauce. We beg and plead with her to eat it and she usually does. Occasionally we have to force it in her mouth. Then we pray...hard...that she will sleep. Then she gets 1/2 cap of Miralax mixed in another bottle of milk and she takes the bottle. She has battled constipation from the very beginning of her life. I did the best I knew how to do but she ended up with fissures from extreme constipation. There was a time when every 3 days we had to dig out an impaction. She would scream and cry and bleed and then I would cry and feel terrible for hurting my baby. This went on for about 6-9 months until we finally got her Miralax dose to the right point. We tried everything else we knew to do but it just wasn't getting better. Then there are the doctor visits. They seemed at first to be never ending but things have gotten better. It is hard with her because she does not feel pain the same as others. I have to always be second guessing if she is hurting or not because unless she is in extreme pain she will not fuss or cry. I seriously believe she could break a bone and never give us any indication. And with the doctors, you have to be very careful. When you have a child with a brain injury doctors are a huge part of your life. But if you allow one of them to mess up you will never be able to do anything about it because they will say your child was already damaged and that whatever happened was just due to the CP. Nobody will be held accountable. And if you think the doctors know what to do with special needs kids, well, you are wrong. The parent has to become the expert and navigate the system. You take a crash course by reading everything you can get your hands on and then do the best you can. CP kids are basically not insurable. Luckily Kenneth and I have group insurance through our jobs but if we did not there would not be hope of getting private health insurance for her. The average cost of raising a kid with CP until age 18 is like $900,000-nobody wants to willingly and knowingly take that on. And we make too much money for any government funded programs. She is not dumb, her muscles just don't work right. I expect her to graduate from high school and go to college just like any other kid. So you see she is a normal kid, but then again she is not. I hope that as she grows older she feels more like a normal kid than not. I hope that she will be oblivious to the stares that I already see. I think mostly the stares are because she is so tiny but I don't really know that. I am used to her because she is like she has always been and I have no idea how an outsider sees her. I do not know if her stiffness and wide and clumsy gait are noticeable to the untrained eye. Her doctors records say she is "dysmorphic" so I don't know if others see that too. Mostly, I don't care. She is my Anna and I love her. Do I wish things were different? Yes and no. I will not lie, she is exhausting beyond what I have the words to express. I wish things were different for her so that she would not have to struggle so hard for the simple things we all take for granted. I wish Kenneth and I could have more of a break sometimes. But this CP, it has brought us blessings too. More blessings than I can count...

Friday, August 7, 2009

Politically Correct

Anna's Sunday School teacher called to let me know it was time for Anna to promote to the next class but that she um, well, uh, um, well, uh "just isn't ready." I already knew she was not up to speed with the kids in the next class and that is ok. I actually prefer for her to be where she fits in best, even if it is with the babies. I felt sorry for the teacher who likely got "picked" to be the one to call and tell me my kid is behind. It must have been hard for her! She is such a sweet lady and I love her honesty. Honesty is such a hard thing to come by these days. I just wish that when people are wrong they could just say "I'm sorry." It certainly is not the easiest thing to say but when it is needed, it is just needed. It can be so healing to hear some one sincerely say they are sorry. So if you wrong someone don't be afraid to say you are sorry, you just might change their life and yours too. I mean, really, wouldn't that be the honest thing to do?

Thursday, August 6, 2009

Not a Millionaire

Frustration Level- High. Patience Level- Low. These are where my gauges stand right now. I tried to get Anna's medical records today and learned I would have to be a millionaire to acquire them. It is insane that illegals can get free health care and I have to pay for my health care and then pay again for the records about the care I already paid for. A chart the size of Texas at $1.00 for the first page and $.50 for each additional page equals, well, um, more than I can afford. I am trying to collect the records for my own files and also because we are switching doctors. All of us. I will no longer pour salt in the wounds that are still so fresh. I feel like Anna's CP was preventable and whether I am right or wrong that is how I feel. Every time I walk into the same doctor's office that delivered Anna it is such a painful thing. I am angry. I have tried to live in the fairytale world and pretend like everyone did everything they could and that things just happen but the facts just don't support the fairytale. I have read until I am blue in the face and everything I find supports what I think is right and I am so mad. I have been afraid for a long time to let myself get mad. I am afraid if I allow myself to feel the rage that I know exists that I will go to some dark place and never be able to climb back out. The weird thing is that I have not been mad at God. That seems to be people's natural reaction but it just isn't with me in this case. He didn't make questionable decisions, people did. But enough about my anger. Brad was here again on Monday and speech went well. He was supposed to start coming every other week but after further consideration he decided he needs to be here weekly. He basically has one year with her until she ages out of Early Intervention and he feels it will take a visit a week for that full year to get her where she needs to be. I am glad he is willing to give her what she needs. She really likes him and I think she will make great strides with him as her teacher. Her not sleeping was apparently not a phase and so we had to make more med adjustments. We stopped the Tranxene and started her on Trazadone. I did not really want to but felt there was not a lot of other choice at this point. She is sleeping so much better and even sleeping all night in her own bed about 50% of the time- that is huge for us!! She is not wanting to eat much again and losing weight- that is bad for us!! She had finally lost her FTT (failure to thrive) label but is headed quickly back in that direction. Oh well, you can't have it all. Carly is doing well. She is excited about school coming up but terrified of the shots she needs to be able to go. She is signed up for ballet and now soccer too. I had always said one activity at a time but she has sacrificed a lot for her sister so I feel like every now and then she needs to get a reward for it and she really wanted to play soccer. It is never dull around here. Oh and congrats to my sister and her family on the birth of their 3rd child, Charles Wesley Braswell. He was born a week ago today and weighed in at a hefty 8 lbs 6 oz and 21 in long. He is adorable and I am so happy for them!